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

Aim 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]

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]

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]

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

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]

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: 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]

Aim The aim of this study was to report on an analysis of the concept of pre-death grief in the context of dementia family caregiving. Background Research indicates that witnessing changes and losses in a family member with dementia can lead to pre-death grief. Pre-death grief is associated with depression, burden and maladaptive caregiver coping. However, the concept lacks a refined definition and blurs with similar constructs. Design Concept analysis using a hybrid of Penrod and Hupcey's principle-based concept analysis and Chin and Kramer's conceptualization of meaning. Data Sources 49 peer-reviewed papers (2000-2013) that addressed pre-death grief in dementia family caregivers were used for the principle-based analysis; two examples from the popular media were used for the analysis of conceptual meaning. Methods The scientific papers were examined for epistemological, linguistic, pragmatic and logical clarity. The two examples from the popular media were explored for conceptual meaning. Results Pre-death grief in the context of dementia caregiving is a meaningful concept found in the popular media. From a scholarly point of view, it is an emerging concept. A definition is offered to advance conceptual clarity. Discussion focuses on advancing the concept into a situation-specific middle-range theory of pre-death grief in family caregiving. Conclusions The concept of pre-death grief has salience for researchers and caregivers. This analysis lays the foundation for use of the concept in nursing research and practice across cultural, environmental and illness domains. [ABSTRACT FROM AUTHOR]

Aim: To identify the factors pertaining to the quality of life (QOL) among the mothers of patients with cerebral palsy. Methods: In this cross‐sectional study, 203 mothers of children with cerebral palsy were selected using convenience sampling. The World Health Organization's Quality of Life Questionnaire (WHOQOL‐BREF), the Beck Depression Inventory, the Caregiver Difficulties Scale, Fatigue Severity Scale, and a demographic information questionnaire were administered to these caregivers. Hierarchical multiple linear regression analysis was used to detect the factors associated with QOL. Results: Moderate to high significant negative correlations were observed between all WHOQOL‐BREF domains and the other measures. The demographic/clinical variables were controlled, and hierarchical multiple linear regression analysis was run. The results indicated that depression, the burden of care, fatigue, and the type of cerebral palsy could significantly predict QOL in these mothers. Furthermore, QOL was lower in the mothers of children with tetraplegia than those of children with other types of disabilities (P <.05). Conclusion: QOL of mothers of children with cerebral palsy is negatively impacted by various factors such as burden of care, fatigue, and psychological symptoms. Thus, a holistic approach, including training (carrying, positioning, feeding, and how to manage the self‐care of children) and psychological interventions, is required to improve QOL among this population. SUMMARY STATEMENT: What is already known about this topic? Unlike developed countries, there are a few studies conducted on caregivers of patients with cerebral palsy in developing counties.The lack of any supporting systems in developing countries caused most of the burden of care to be on the shoulders of caregivers. What this paper adds? This paper showed that the burden of care of mothers caused psychological symptoms such as depression, stress, and decrease in QOL. The implications of this paper: Considering the chronicity of cerebral palsy and that caregivers may provide care long‐term, interventions are needed in order to decrease the burden of care and psychological symptoms and enhance QOL.The significant relationship between severity of cerebral palsy and burden of care indicates special training packages could be targeted to decrease the burden of care, physically, emotionally, and financially. [ABSTRACT FROM AUTHOR]

Aim: Lewy body dementia is a common neurodegenerative dementia with unique challenges in managing day‐to‐day life. A more in‐depth multifaceted picture of the Lewy body dementia lived experience will enable identification of best practice and future research direction. The review aim was to explore experiences of people living with Lewy body dementia and their family carers. Design: Integrative review method informed by Whittemore and Knafl, supported by the information retrieval framework PALETTE. A convergent integrated approach enabled synthesis of key findings and theme identification. Data sources: Medline, CINAHL, PsycINFO, AMED, and ALOIS databases were systematically searched to find studies published between 1995 and 2020. Review Methods: Twenty‐six articles from twenty studies were synthesized (from 1583 retrieved). Quality and relevance were appraised using the Mixed‐Methods Appraisal Tool and Gough's 'Weight of Evidence' framework. Data management was supported by ATLAS.ti 8 and COVIDENCE software. Results: Four themes were identified: living with an uncertain diagnosis and prognosis; fear of the now – worry for the future; living with behavioural and psychiatric symptoms; and maintaining a social and emotional life. People reported difficulty finding information and support around diagnosis, disease progression and managing complex symptoms. The result is increased caregiver burden, grief and stress and reduced quality of life. Conclusion: Delayed diagnosis and complex symptom burden means people are not getting the timely support and information they need to live and die well. Current evidence is largely quantitative, with a focus on family caregiver burden and unmet need. The challenge remains in how to capture a more holistic picture of the lived experience for people living with Lewy body dementia and those who care for them. Impact: This review highlighted current knowledge and identified gaps in exploring the lived experience for people with Lewy body dementia and their families. [ABSTRACT FROM AUTHOR]

Aims This paper uses Dorothy Smith's institutional ethnography to examine technological advances designed to improve nurses' work. The analysis interrogates how nurses' work is coordinated, in disquieting ways, in an apparent commitment to 'patient and family centred care'. Background The discussion is part of a larger programme of research that focuses ethnographic attention on nurses' activating technological managerial improvement strategies. Design This discussion paper describes suboptimal hospital experiences to show how they were organized. The institutional ethnographic analysis addresses discrepancies that arise between the different organizational standpoints. Overall the discussion focuses on how institutional ethnographers enquire into people's everyday activities to discover and make understandable, in the material world, what actually happens that shapes them. Data sources Data include observations and interviews with nurses, nurse managers, patients and families. It also includes screenshots of computer fields and other documents being used by nurses. Implications for nursing Nursing work is methodically being oriented to interests that undermine nurses' capacity to contribute their knowledgeable activity to intervene in people's health and well-being. Conclusion Nurses' work is overwhelmed with the imperative to discharge patients. This happens with an ideological construction of patient centred care that obscures what is actually happening. [ABSTRACT FROM AUTHOR]

1HypothesisDisabled elders' activities of daily living, caregiver burden, caregiver depression, and caregivers' life satisfaction are significantly related to the life satisfaction of elderly people with disability.2HypothesisThere are direct and indirect effects between the life satisfaction of elders, disabled elders' activities of daily living, and family caregivers' factors. This study explored the interrelationships of disabled elders' life satisfaction and activities of daily living, caregivers' factors (burden, depression, and life satisfaction) through a structural equation model. In total, 621 dyads of disabled elders and informal family caregivers completed questionnaires during face ‐ to ‐ face interviews in Xinjiang Uyghur Autonomous Region from September 2013 to January 2014. Activity of daily living exerted a direct effect on life satisfaction of disabled elders and 30.4% indirect effect through caregivers' factors. Caregiver burden had a 60.0% direct effect on life satisfaction of disabled elders and a 40.0% indirect effect through the caregiver depression. Caregiver depression showed 76% direct effect on life satisfaction of disabled elders and 24% indirect effect through caregivers' life satisfaction. Direct relationships between activity of daily living and caregiver burden, caregiver burden and caregiver depression, and caregiver depression and caregivers' life satisfaction were observed. Activity of daily living had a 91.3% indirect effect on caregiver depression mediated by caregiver burden; caregiver burden had a 40.0% indirect effect on caregivers' life satisfaction mediated by caregiver depression. Results provide useful information for nurses and policymakers and shed light on the need to consider caregivers' factors in improving care recipients' life satisfaction. SUMMARY STATEMENT: What is already known about this topic? Disabled elders' life satisfaction is related to factors of the poor state of their own and caregivers' problem e.g. caregiver burden.The mechanism of how the factors affect disabled elders' life satisfaction is unclear. What this paper adds? The study created a causal chain among the disability elders' activity of daily living, caregivers' burden, depression, life satisfaction, and disabled elders' life satisfaction and explored the interrelationship between above factors and disabled elders' life satisfaction.Findings indicated that family caregivers' burden not only affects elders' life satisfaction directly but also brings further problems to affect disabled elders' life satisfaction indirectly. The implications of this paper: Government should pay high attention to the families of elderly people in long ‐ term home care; pension policies should support elders' families including informal family caregivers in poverty ‐ stricken ethnic minority areas.Examples of support include establishing assistance for the disabled elders, care training for family caregivers for free, establishment and improvement of respite care institutions, and psychological counselling. The caregiver's health should be comprehensively considered; formulation and improvement of a specialized disabled elders' family services.Nursing educators should include knowledge of the elderly in home care and ways of coping with care, nursing skills, and time management should be taught to family caregivers. [ABSTRACT FROM AUTHOR]

Aims and objectives: To identify factors associated with the caregiving appraisal of informal caregivers. Background: Caregiving appraisal, the cognitive evaluation of the caregiving situation, is an essential factor in determining positive or negative caregiving outcomes. Identifying factors associated with appraisal is fundamental for designing effective health promotion strategies. Design: A systematic review. Methods: PubMed, EMBASE, CINAHL, PsycINFO, Social Sciences Citation Index, Scopus, CNKI and Wanfang Database were searched for papers published from 1984 to December 2018. Keywords related to informal caregivers' caregiving appraisal were used. Cross‐sectional and cohort studies were included. The Quality Assessment and Validity Tool for Correlational Studies, and the CASP Cohort Study Checklist were used for quality assessment. Descriptive and narrative synthesis were used to analyse data. Social ecological model was used for classifying the associated factors into different levels. The PRISMA checklist was followed. Results: Forty studies were included. The quality of the studies was moderate to high. Data were organised into three levels (individual, interpersonal and community level) and categorised into modifiable factors (e.g. patient behavioural problems, caregiver self‐efficacy and social support) and nonmodifiable factors (e.g. caregiving duration, gender and education). The majority of studies have investigated the factors at the individual level. Conclusion: There are inconsistencies in the understanding of caregiving appraisal, and consensus is needed for conceptual clarity. Caregiving appraisal is associated with three levels of factors. These modifiable factors provide evidence for designing evidence‐based interventions, and the nonmodifiable factors help identify confounding factors in assessment and appraisal. Relevance to clinical practice: Nurses are the best‐placed healthcare professionals to support informal caregivers. The three levels of associated factors and the interactive approaches provide direction for informing clinical nursing practice. They also provide evidence for healthcare researchers and policymakers to develop interventions and theoretical perspectives and to better allocate healthcare resources. [ABSTRACT FROM AUTHOR]

Accessible summary: What is known on the subject?: Positive aspects of care are considered an essential part of caregiving research. They have been related to a wide range of dimensions of the caregiving circumstances, but there are few valid, reliable and brief measures to assess them. One of the most frequently used internationally is the Positive Aspects of Caregiving (PAC) scale, whose psychometric properties have received little attention. What the paper adds to existing knowledge?: The present study analyses the psychometric properties of the Portuguese version of the PAC scale in a sample of informal caregivers of someone with dementia and further explores the association of different factors (e.g. caregiver health, sociodemographic variables) with the PAC.The Portuguese version of PAC scale presented good psychometric characteristics, and the factor analysis revealed the presence of two factors: affirming self and enriching life.Our study also verified that higher levels of PAC are more likely to be associated with better caregiver health perception, lower levels of psychological distress and burden, the care recipient's older age, providing care to more than one care recipient, not receiving social support services and not considering institutionalizing the care recipient. What are the implications for practice?: Findings from this study can assist professionals, including mental health nurses, to develop and implement effective interventions that help dementia caregivers to maintain their emotional health by identifying and focusing specific positive aspects of care. The study stresses the Portuguese version of the PAC scale as a reliable and valid measure for practice. Introduction: Positive aspects of care refer to the psychosocial benefits of caregiving. The Positive Aspects of Caregiving (PAC) scale is one of the instruments most frequently used internationally, but its psychometric properties and correlates within the caregiving experience have received limited attention. Aim: To examine the factorial structure of the Portuguese version of PAC scale and to analyse background and contextual factors that are more likely to be associated with higher levels of PAC. Method: The PAC scale, a sociodemographic questionnaire and measures assessing burden and physical and mental health were administered to 204 informal caregivers of dementia patients. Results: Exploratory factor analysis revealed a two‐factor structure; internal consistency was adequate. Higher scores were negatively correlated with caregiver burden and distress. Better health perception, care recipient's older age, providing care to more than one care recipient and overall self‐reliance were correlated with higher levels of PAC. Discussion: The PAC scale was found to be a reliable and valid measure. Dementia caregiving circumstances and caregivers' and care receivers' characteristics play an important role for the presence of PAC, but relate distinctively with its dimensions. Implications for Practice: Findings can help mental health nurses to recognize distinctive relations between PAC and caregiving variables. [ABSTRACT FROM AUTHOR]

Background: While previous research has established that resilience is affected by various factors, these studies have primarily focussed on individual variables associated with resilience, without providing insights into how to influence the rate of change in resilience. Aim: To examine the trajectory of resilience and identify the factors associated with changes in resilience among spousal caregivers of patients with newly diagnosed advanced cancer receiving treatment during the first 6 months. Design: An observational longitudinal study. Methods: A total of 312 spousal caregivers of patients with newly diagnosed advanced cancer were recruited from January 2022 to December 2022 in Yancheng, China. Three data collection points were established, spanning from the first month to 6 months after initial cancer treatment. A latent growth model was employed to depict the resilience trajectory at various time points. A latent growth model with time‐invariant covariates was adopted to determine the factors influencing resilience trajectory. The study adhered to the STROBE checklist for proper reporting. Results: Throughout the follow‐up period, the participants experienced a significant increase in resilience. Gender, family income, the patient's health status, spirituality and belief in familism were significantly associated with the baseline resilience level. Moreover, family income, the patient's health status, spirituality, caregiver burden and belief in familism were significantly associated with the rate of resilience change over time. Conclusions: Spousal caregivers demonstrated a linear increase in resilience during the first 6 months after initial treatment. Meanwhile, changes in resilience were influenced by multiple factors during the early phase of cancer treatment. Thus, more attention should be paid to early identification and implementation of targeted interventions. Relevance to Clinical Practice: Healthcare professionals should understand the change in resilience among spousal caregivers and conduct timely mental health interventions to enhance the resilience of families affected by cancer. Patient or Public Contribution: The Guidance for Reporting Involvement of Patients and the Public‐Short Form reporting checklists were used to improve patient and public involvement. [ABSTRACT FROM AUTHOR]

Aim: To examine the effects of spousal support and parent–nurse partnership on caregiver burden of parents of children with chronic disease. Background: With the trend of increasing the global number of children with chronic diseases, the parental caregiver burden has become increasingly prevalent. Design: Cross‐sectional study. Methods: The study participants included 115 parents of children diagnosed with chronic disease at a general hospital in South Korea. The study duration was 4 June 2021–30 April 2022. Self‐reported measures included the parent–nurse partnership scale, the Korean version of the Parenting Alliance Inventory and the family caregiver burden scale. T‐tests, ANOVA, Pearson's correlation coefficients and hierarchical linear multiple regression were conducted using IBM SPSS version 26.0. This study followed STROBE guideline. Results: Parental caregiver burden was significantly negatively associated with spousal support and parent–nurse partnership. Factors significantly influencing caregiver burden were parental alcohol consumption; child's inherited metabolic disease, cardiovascular disease, disease relating to haematological tumours or kidney disease diagnosis; child's health perceived as poor by parents; child's dependency perceived as high by parents; hospitalization recency; and low spousal support. These factors accounted for 65% of caregiver burden. Conclusion: Parental caregiver burden was related to spousal support and parent–nurse partnership, but the primary factor affecting caregiver burden was spousal support. Relevance to clinical practice: The results highlighted the role of healthcare professionals in educating parents of children with chronic diseases to facilitate spousal support and have implications for nursing and community‐based interventions to reduce parental caregiver burden. Furthermore, they underlined that policymakers and other stakeholders should pay attention to the parental caregiver burden through government‐based, family‐centered strategies. Patient or public contribution: Parents of children with chronic disease were recruited to perform the self‐administered survey in the phase of data collection. [ABSTRACT FROM AUTHOR]

Aims and objectives: To examine the effectiveness of family‐centred interventions among family caregivers. Background: Family‐centred interventions are an emerging form of intervention that can be effective at improving physical and mental health outcomes for patients and family caregivers. To date, no reviews have examined the effectiveness of family‐centred interventions for family caregivers. Design: A systematic review, including a meta‐analysis, was conducted according to the Preferred Reporting Items for Systematic reviews and Meta‐Analyses (PRISMA 2020) checklist. Methods: Seven English and two Chinese electronic databases were compressively searched from the outset to March 2023. Two researchers independently reviewed the abstracts and full texts, extracted the data and assessed the risk of bias independently by using the Cochrane 'Risk of bias assessment tool'. Results: This systematic review and meta‐analysis included 20 articles. The results of the meta‐analysis showed that family‐centred interventions could significantly improve caregiver burden (p=0.003), quality of life (p = 0.007), depression (p = 0.0002), and stress (p < 0.0001) but not anxiety or family functioning. According to our subgroup analysis, the family‐centred empowerment model (p = 0.009) was superior to the other family intervention (p=0.004) in reducing caregiver burden. Family‐centred interventions are more effective at reducing the burden of caregiving on family caregivers of adolescent patients (SMD=−0.79, 95% CI[−1.22,−0.36], p = 0.0003) than on adult patients (SMD=−0.37, 95% CI [−0.61,−0.12], p = 0.004). Conclusions: Family‐centred interventions could enhance family caregivers' burden, quality of life, stress and depression but had no significant impact on anxiety or family functioning. Relevance to Clinical Practice: Family‐centred interventions have the potential to improve the health status and caregiving burden of family caregivers. Rigorous and high‐quality evidence is needed to confirm the long‐term effects of these interventions on family caregivers. Trial Registration Details: The protocol has been registered in the PROSPERO international prospective register of systematic reviews (Protocol registration ID: CRD42023453607). [ABSTRACT FROM AUTHOR]

Background: Caregivers of children with chronic diseases suffer from great parenting pressure, which directly affects the treatment and rehabilitation of children, reduces the quality of life of caregivers and damages family functioning. Existing reviews have not systematically summarized and evaluated interventions for parenting stress in caregivers of children with chronic diseases. Data Sources: Embase, PubMed, Web of Science, OVID, CNKI, CBM, Wan Fang and Cochrane Library were searched for eligible reviews in November 2021 and October 2022. Methods: Two reviewers independently screened titles and abstracts, reviewed full texts of articles for eligibility, and appraised the quality of reviews using JBI. The quality of the evidence was assessed using GRADE. Findings are reported in accordance with PRISMA checklist. Narrative summaries grouped findings by intervention types. Results: Out of 2632 records, we included 21 systematic reviews for a synthesis. Interventions for parenting stress in children with chronic diseases were divided into seven categories. Cognitive behavioural interventions, psychosocial interventions, child behavioural and/or developmental parent interventions and synthesized interventions have shown high‐level evidence in reducing parenting stress for caregivers of children with chronic diseases. Furthermore, outcome measures and intervention protocols were highly heterogeneous across interventions. Conclusions: This umbrella review suggest that reducing the parenting stress of caregivers of children with chronic diseases can directly target caregivers' parenting stress through cognitive behavioural interventions/psychosocial interventions and/or provide guidance to parents on the behavioural and developmental problems of children with chronic diseases. A more standardized approach to outcome measures is essential to assess efficacy and compare interventions across studies. Relevance to Clinical Practice: The findings provide information and evidence for reducing parenting stress among caregivers of children with chronic diseases to guide the development of comprehensive intervention strategies. Patient or Public Contribution: Patient or public contribution does not apply to this study. [ABSTRACT FROM AUTHOR]

Accessible summary What is known on the subject? Caregivers of adolescents with ADHD experience major difficulties as care providers and are in need of guidance and support., Adolescents with ADHD may develop oppositional and criminal behaviour. More than 50 % have the symptoms in adulthood, and up to one-fourth with severe emotional or antisocial difficulties., There is a lack of evidence of caregivers′ supporting intervention although caregiver groups have been found to contribute to better coping, decreased stress and improvements in ADHD symptoms., What does this paper add to existing knowledge? Primary caregivers of adolescents with ADHD experienced better quality of life after the Therapeutic Conversation Intervention., The intervention contributed to better social functioning among secondary caregivers., What are the implications for practice? The content of the Therapeutic Conversation Intervention is significant and highlights the utility of a combination of group and private sessions for caregivers of people with ADHD., The intervention can influence how services for families are organized, such that a Therapeutic Conversation Intervention could be offered on a regular basis., Abstract Introduction Caregivers of adolescents with Attention Deficit Hyperactivity Disorder are burdened with tasks and many suffer from distress. Adolescents with ADHD may develop antisocial behaviour and caregiver′s group can empower caregiver's supporting role. Aim/Question To evaluate the effectiveness of a Therapeutic Conversation Intervention on caregivers of adolescents with ADHD regarding strengthening the supportive role. Method The study utilized a quasi-experimental design. The participants ( n = 60) were caregivers of adolescents (13-17 years old) with ADHD. The intervention consisted in-group and parent sessions. The Calgary Family Model and the Family Illness Beliefs Model were used as theoretical frameworks. Results The study revealed significant differences in the improvement of quality of life; regarding primary caregiver ( PC) worry, daily activities, family relationships and collaboration post-intervention, as well emotional functioning at both post-intervention and follow-up. Secondary caregiver ( SC) social functioning was significantly improved at follow-up. Discussion The intervention proved to be beneficial to the caregivers and is filling a gap in much needed intervention. Implication for practice The results will expand health care professionals' knowledge of how to increase PC quality of life when supporting their adolescent with ADHD. This treatment information should improve service at health care centres/hospitals where adolescents with ADHD receive care. [ABSTRACT FROM AUTHOR]

Aims: To explore the lived experiences of caregivers of people living in long-term care (LTC) homes during the initial phases of the COVID-19 pandemic and potential supports and resources needed to improve caregivers' quality of life. Background: Carers (or care partners) of adults in LTC contribute substantially to the health and well-being of their loved ones by providing physical care, emotional support and companionship. Despite their critical role, little is known about how caregivers have been impacted by the pandemic. Design: An interpretive descriptive approach that incorporated the photovoice method was used. Methods: Using a purposive sampling strategy, six family carers in Ontario, Canada were recruited between September and December 2021. Over a 4-week period, caregivers took pictures depicting their experience of the pandemic that were shared in a virtual focus group. Visual and text data were analysed using thematic analysis with an inductive approach. Findings: Caregivers expressed feelings of frustration, confusion and joy. Emerging themes included: (i) feeling like a 'criminal' amidst visitor restrictions and rules; (ii) experiencing uncertainty and disappointment in the quality of care of long-term care homes; (iii) going through burnout; and (iv) focusing on small joys and cherished memories. Conclusions: The combination of visual and textual methods provided unique insight into the mental distress, isolation and intense emotional burdens experienced by caregivers during the pandemic. Impact: Our findings underscore the need for LTC organizations to work in unison with caregivers to optimize the care of residents and support the mental health of caregivers. Reporting Method: This work adhered to the consolidated criteria for reporting qualitative research (COREQ) checklist. Public Contributions: The caregivers included in the study were involved in the cocreative process as active contributors informing the design and validation of the codes and themes. [ABSTRACT FROM AUTHOR]

Introduction: Transitional care interventions have emerged as a promising method of ensuring treatment continuity and health care coordination when patients are discharged from hospital to home. However, few studies have investigated the frequency and duration of interventions and the effects of interventions on physical function. Therefore, this study aimed to determine the efficacy of transitional care for patients with stroke. Methods: Six databases and the grey literature were searched to obtain relevant articles from October 1, 2022 to March 10, 2023. The primary outcomes studied were motor performance, walking speed, activities of daily living (ADLs) and caregiver burden following hospital‐to‐home transitional care. The quality of the studies was assessed with Cochrane risk of bias version 2. The quality and sensitivity of the evidence were assessed to ensure rigour of the findings. Meta‐analyses were performed using stata 17.0. Results: A total of 2966 patients were identified from 23 studies. Transitional care improved post‐stroke motor performance, walking speed and ADLs, and reduced caregiver burden. Conclusion: The findings suggest that provision of transitional care model implementation in patients with stroke is important because it reduces disability in stroke patients and helps to decrease caregivers' burden. Impact: The findings of the study emphasize the importance of transitional care programmes for stroke patients after they are discharged from the hospital and returned to their homes. To meet the needs of patients, all levels of health professionals including nurses should be aware of the discharge process and care plan. [ABSTRACT FROM AUTHOR]

Aims: The aim of this study was to explore factors that influence family caregiver readiness to adopt health smart home technology for their care‐dependent older adult family member. Health smart homes are designed to remotely monitor the health and wellness of community‐dwelling older adults supporting independent living for as long as possible. Accordingly, if the health smart home is deployed into the home of a care‐depended older adult, it can potentially support family caregivers by facilitating workforce participation and give piece of mind to the family caregiver who may not live close to the older adult. However, wider adoption of health smart home technologies into the homes of community‐older adults is low, and little is known about the factors that influence the readiness of family caregivers to adopt smart home technologies for their care‐dependent older adults. Design: A qualitative Descriptive study design was utilized. Methods: Qualitative data were collected between 2019 and 2020 via semi‐structured interviews. Thematic analysis of interviews was completed, and data were organized into themes. Results: Study findings show that caregiver readiness (N = 10) to adopt smart home technology to monitor older adult family members were influenced by five primary themes including a 'big brother effect', 'framing for acceptance', 'data privacy', 'burden' and 'cost.' Conclusion: Family caregivers were open to adopting smart home technology to support the independent living of their older adult family members. However, the readiness of family caregivers was inextricably linked to the older adults' readiness for smart home adoption. The family caregiver's primary concern was on how they could frame the idea of the smart home to overcome what they viewed as hesitancy to adopt in the older adult. The findings suggest that family caregivers endeavour to balance the hesitancy in their older adult family members with the potential benefits of smart home technology. Impact: Family caregivers could benefit if their care‐dependent older adults adopt smart home technology. Recognizing the role of caregivers and their perspectives on using smart home technologies with their care‐dependents is critical to the meaningful design, use and adoption. [ABSTRACT FROM AUTHOR]

Accessible summary What is known on the subject? Delusions are common experiences in psychosis and this is reflected in the number of studies focused on improving our understanding of their development, impact, and treatments. Many service users with psychosis are in informal caregiving relationships and carers can play an instrumental role in the recovery process., There remains a lack of knowledge and understanding about carer experiences and how they cope when their relative's delusions involve them or close others., What this paper adds to existing knowledge? Data drawn from five individual carer interviews, which were subject to interpretative phenomenological analysis, identified the importance of six key themes. In addition to a carer's exposure to their relative's illness symptoms and a reported lack of understanding about their relative's delusions, was a fear of delusion-driven behaviours, and the carer's attempt to conceal the true extent of their caregiving challenges to others. Carers' relationships were fractured and their coping was best described as an ongoing process, mainly developed through trial and error., It extends our understanding of important issues faced by a subgroup of carers and facilitates discussion beyond their levels of stress and burden., What are the implications for practice? The study, with its limitations, indicates some carers may live in fear of harm from their relatives but also be reluctant to disclose to others the full story of what they are coping with., Health professionals must routinely assess for risks that informal carers may be exposed to as part of their role, and offer tailored support and interventions., Abstract Background In recent years, there has been a gradual shift towards the study of individual symptom presentations in psychosis, this is particularly found in studies of delusional beliefs. However, the literature remains sparse on informal caregiver experiences of individual symptoms. Aim The study sought to investigate carer experiences of supporting a relative with delusional beliefs, which involve family members. Methods Semi-structured interviews were undertaken with five caregivers and subject to interpretative phenomenological analysis. Results Interviews yielded six superordinate themes highlighting issues concerning a carer's exposure to symptoms of illness; lack of understanding about their relatives' delusional beliefs; concerns over coming to harm from their relative: efforts made by the carer to conceal their relative's delusional beliefs and their consequences; fractured relationships, and a long process of learning how to best cope. Conclusion Caring for a relative with psychosis who experiences delusional beliefs about the carer and family members can be challenging. The results underscore the importance of providing a programme of support to meet the varied needs of informal carers with an explicit aim of assisting carers in their day-to-day problem solving. It should also help to address issues carers may have about causality, including beliefs about self-blame, and identifying effective coping strategies. [ABSTRACT FROM AUTHOR]

Accessible summary What is known on the subject? Suicide is a global mental health issue. Taking care of suicidal individuals is a substantial challenge. Most studies emphasize the suicidal individual. Few studies have emphasized the family caregivers of suicidal individuals., No study has explored the relationship between family caregivers' caring stress with suicidal attitudes and suicide care ability., What this paper adds to existing knowledge? The main results indicated that the older family caregivers tended to have a more negative attitude towards suicidal individuals. Female family caregivers' stress was higher than that of male family caregivers., A mild level of caring stress would help family caregivers have a more positive attitude towards suicidal individuals. Furthermore, a positive attitude would help family caregivers improve their caring ability., What are the implications for practice? Mental health nurses could help family caregivers, especially female family caregivers, reduce their holistic caring burden by looking for support resources and enhancing their coping strategies., Mental health nurses could help family caregivers promote positive attitudes towards suicidal relatives by understanding suicidal individuals' suffering., Abstract Introduction Suicide is a global mental health issue. Family caregivers play a key role in preventing suicide attempts. Aims The aim of this study was to examine the relationship among stress due to the family caregiver's role, suicidal attitude of the family caregiver and suicide care ability among family caregivers. Additionally, instruments of caring stress, attitudes towards suicidal relatives and caring abilities used in the study were tested to measure construct validity. Methods A cross-sectional correlational study was conducted with 164 family caregivers of people who are suicidal. The following three questionnaires were used: the Caring Stress Scale, the Suicidal Attitudes Scale and the Suicidal Caring Ability Scale. Structural equation modelling was performed using SPSS AMOS 19.0 to examine the path relationships among variables. Results Bivariate analyses showed that age was negatively correlated with suicidal attitude. In the final path model, caring stress had a positive effect on suicidal attitudes. Suicidal attitude and suicide care ability were highly positively correlated. Gender had a direct effect on caring stress, which indicated that female family caregivers experienced more stress from their role. Implications for practice: Mental health nurses could help family caregivers become aware of the emotional pain that suicidal people experience and then promote their positive attitudes towards their suicidal relatives. Furthermore, family caregivers could increase their ability to care for their suicidal relatives, which could reduce the numbers of suicides. [ABSTRACT FROM AUTHOR]

This paper examines the experiences of mothers caring for a child with Down syndrome in the Malaysian ( Sarawak) context. Qualitative interviews were conducted with 26 biological mothers of children with Down syndrome aged 18 years and below. They were accessed through selected child health clinics, community-based rehabilitation centres and schools using purposive sampling within two regions in Sarawak, one of the two Borneo States of Malaysia. Major themes emerging within the context of care demands were children's health, developmental delays, daily needs and behaviour issues. The insights obtained into the care demands experienced by mothers of children with Down syndrome have several implications for practice by care professionals. [ABSTRACT FROM AUTHOR]

Aims and objectives The primary aim of this study was to examine the correlations between patient and caregiver characteristics with caregiver burden, anxiety and depression in Alzheimer's Disease. Secondary aim was to determine which behavioural and psychological symptoms had the greatest impact on caregiver burden, anxiety and depression in Alzheimer's Disease. Background Caregivers of individuals with Alzheimer's Disease experience high levels of burden, both psychologically and physically. Previous studies have examined caregiver burden, anxiety and depression separately. However, no paper has examined these three psychological conditions simultaneously. Design A cross-sectional design. Methods A total of 310 patients with probable Alzheimer's Disease and their primary caregivers were assessed. Cognitive impairment and neuropsychiatric symptoms were assessed with the Mini Mental State Examination, Montreal Cognitive Assessment, Clock Drawing Test and Neuropsychiatric Inventory, respectively. Caregiver burden, anxiety and depression were assessed with the ZBI, Generalised Anxiety Disorder Scale-7 and Patient Health Questionnaire-9, respectively. Results All 12 neuropsychiatric symptoms in the Neuropsychiatric Inventory were significantly correlated with caregiver burden, anxiety and depression, with the top three neuropsychiatric predictors being depression, apathy and anxiety. Furthermore, higher levels of caregiver anxiety were associated with a longer duration of being a caregiver. Within caregivers, higher levels of depression were independently associated with higher numbers of additional caregivers, lower educational background and being the spouse of the patient. Higher levels of burden were associated with a longer duration of being a caregiver and being the spouse of the patient. Caregiver burden, anxiety or depression were not significantly correlated with hours/day of caring for the patient. Conclusions Caregiver burden, anxiety and depression were significantly correlated with different neuropsychiatric symptoms in the Neuropsychiatric Inventory. Relevance to clinical practice Practitioners are able to identify caregivers at risk for burden, anxiety and depression. Understanding which Neuropsychiatric Inventory symptom is more closely associated with distress in caregivers will help practitioners to be more specific and effective in detecting caregiver distress. [ABSTRACT FROM AUTHOR]

Aim To evaluate the effectiveness of interventions to support caregivers of people with selected chronic conditions. Background Informal caregivers provide millions of care hours each week contributing to significant healthcare savings. Despite much research evaluating a range of interventions for caregivers, their impact remains unclear. Design A systematic review of systematic reviews of interventions to support caregivers of people with selected chronic conditions. Data sources The electronic databases of PubMed, CINAHL, British Nursing Index, Psyc INFO, Social Science Index (January 1990-May 2014) and The Cochrane Library (Issue 6, June 2014), were searched using Medical Subject Heading and index term combinations of the keywords caregiver, systematic review, intervention and named chronic conditions. Review methods Papers were included if they reported a systematic review of interventions for caregivers of people with chronic conditions. The methodological quality of the included reviews was independently assessed by two reviewers using R- AMSTAR. Data were independently extracted by two reviewers using a pre-designed data extraction form. Narrative synthesis of review findings was used to present the results. Results Eight systematic reviews were included. There was evidence that education and support programme interventions improved caregiver quality of life. Information-giving interventions improved caregiver knowledge for stroke caregivers. Conclusion Education, support and information-giving interventions warrant further investigation across caregiver groups. A large-scale funded programme for caregiver research is required to ensure that studies are of high quality to inform service development across settings. [ABSTRACT FROM AUTHOR]

Aim This paper reports the prevalence and its related sociodemographic factors of informal caregiving by underage children in Austria. The quantity and intensity of caregiving activities, the motivation for and effects of caregiving and how this differs from non-caregiving children were investigated. Background Young carers are a worldwide phenomenon. Due to methodological and sampling problems, little quantitative data are available. Design Cross-sectional, descriptive study. Methods Based on a random selection of 85 schools and 474 classes, a total of 7403 children aged 10-14 years completed a self-reporting questionnaire that asked for children's help in their families. Descriptive and inferential statistics were used to analyse the data. Results In the sample, 4·5% caregiving children were identified. The average age of young carers was 12·5 years. Most young carers were female (69·8% vs. 52·7% in the non-young carers group). Young carers assumed more responsibilities (household tasks, general care and sibling care) than their peers. They showed a higher level of physical (e.g. headache 38·2% vs. 24·4%) and mental (e.g. to worry about 68·1% vs. 41·8%) adverse effects than non-young carers. Extrapolation suggests a rate of 3·5% young carers in underage children of 5-18 years in Austria. Conclusion Data on national level are essential preconditions to initiate support for young carers. Nurses can promote children's health and well-being through prevention of an inappropriate caregiving role. [ABSTRACT FROM AUTHOR]

Aim: To examine the multidimensional properties of caregiver burden among family caregivers of patients with advanced cancer in a palliative context. Design: A sequential, explanatory, mixed‐method study was performed. Methods: Family caregivers of patients diagnosed with advanced cancer were recruited from a palliative care department of a third‐level hospital in Sichuan Province, China. The Caregiver Burden Inventory, Social Support Rating Scale and Connor–Davidson Resilience Scale were used to collect quantitative data, and a total of 150 caregivers were recruited from January 2022 to September 2022. Qualitative data were collected through semi‐structured interviews, and a total of 22 caregivers were interviewed from October 2022 to November 2022. Survey data were analysed using descriptive statistics, and the factors of caregiver burden were identified using the Mann–Whitney U test, Kruskal–Wallis H test and Spearman correlations. Interpretative phenomenological analysis was performed to analyse the interview data to initially explore the multidimensions of caregiver burden. The following‐a‐thread method and convergence coding matrix were used for triangulation to examine the multidimensional properties of caregiver burden. Results: The participants experienced a moderate level of caregiver burden (32.97 ± 13.09). Through triangulation, six meta‐themes and nine meta‐subthemes were identified as multidimensional properties of caregiver burden, including physical (too many caring tasks and poor health condition), emotional (strong negative emotions resulting from patients' suffering and insufficient and ineffective family communication), social (less social interaction and social role conflict) and economic burdens, factors that aggravate burden (prevention and control of COVID‐19 and spousal relationship with patients) and factors that mitigate burden (social support). Conclusion: Multiple dimensions of caregiver burden were experienced by family caregivers of patients with advanced cancer in the palliative context. Family‐centred palliative care must be further developed. Implications for the profession: It is important to develop family‐centred palliative care. Therefore, the focus must be on developing a rational understanding of palliative care in public and a culture‐oriented death education in palliative units. Impact: This study adopted a mixed‐method approach to comprehensively understand the phenomenon of and factors in caregiver burden in the Chinese palliative oncology context.Our findings suggest that family caregivers in palliative oncology experience a moderate level of caregiver burden, with dimensions including physical, emotional, social and economic burdens, among which emotional burden is the most prominent.The findings of this study provide policy makers and nurse practitioners with targets to be addressed in family‐centred care in Chinese palliative units. Reporting Method: The results of this study are reported based on the guidelines of the Mixed‐Methods Article Reporting Standards. Patient or Public Contribution: Eligible caregivers were invited to participate in the study and semi‐structured interviews. Nurse managers of the palliative unit helped us access the patient‐management system. [ABSTRACT FROM AUTHOR]

Aim: The aim of this study was to assess the caregiver burden over time of patients with haemorrhagic stroke and the determinants of this. Background: Identification of the predictors for caregiver burden can be used to improve the outcomes of stroke survivors and caregivers. Few studies focus on the caregiver burden of patients with haemorrhagic stroke and how this changes over time. Design This was a prospective longitudinal study. Methods: A convenience sample of 202 stroke survivor/caregiver pairs were recruited in the neurosurgery unit from March 2015 to March 2016. The participants were assessed at three different times by face to face or telephone interview. Caregiver burden was assessed using the Bakas Caregiver Outcomes Scale. Sociodemographic data and other characteristics of the pairs were also collected. Multiple linear regression was performed to identify the determinants. Results: Caregiver burden decreased from T1 to T3 significantly. The physical function, depression of stroke survivors, and self‐rated burden of caregivers were the most important determinants for overall caregiver burden. The factors identified explained 41.6% to 67.4% of overall burden. Conclusion: Caregiver burden decreased over time, affected by factors from patients and caregivers. More professional caregivers are needed to support informal carers. SUMMARY STATEMENT: What is already known about this topic? Stoke survivors usually contribute much of the perceived burden of caregivers, especially for family caregivers.Perceived caregiver burden can have adverse effects on both caregivers and patients.Caregiver burden is affected by multiple factors from both caregivers and patients, which vary in different cultures. What this paper adds? Caregivers of patients with haemorrhagic stroke experience burden even during the patients' hospital stay.The factors identified for caregiver burden in China differ from what has been identified in western countries.The self‐rated burden of caregivers is a predictor for overall burden, suggesting this may be used as a screening function. The implications of this paper: The study suggests the early screen of caregiver burden via self‐rated burden could help to detect long‐term burden.There is a need for nurses and other professions to provide psychological nursing and functional rehabilitation to patients postdischarge from health care services.More professional care providers are needed to support informal carers. [ABSTRACT FROM AUTHOR]

Aims. This paper is a report of a study designed to examine the association between modernization and future care preferences among adult children caregivers of older Arab parents in Israel and to identify factors that may mediate the association. Method. Cross-sectional data were collected in 2006-2007 by a structured interview from 250 randomly sampled Arab-Israeli adult children caregivers (response rate = 94%). Respondents' preference for formal and/or informal future care for themselves was regressed on selected predictor variables. Results. The vast majority of family caregivers would 'prefer' to be cared for by family members (76.4%). Urbanization level was a negative correlate of preference for future family care and a positive correlate of preference for future formal care. However, these associations were mediated by the extent of filial piety and caregiving burden. Filial piety was a positive predictor of preference for future family care (OR = 3.6, P < 0.01), and a negative predictor of preference for formal care (OR = 0.09, P < 0.01). Caregiving burden was a positive predictor of preferences for future formal care (OR = 5.15, P < 0.01). Conclusion. Modernization has an impact on future care preferences in traditional cultures. In order to maintain informal family care, community nurses should examine ways to lessen the burden of care among family caregivers. They should also develop culturally sensitive services that will meet the evolving expectations and preferences that are held by the next generations of family caregivers. [ABSTRACT FROM AUTHOR]

The aim was to review available literature on research and service evaluation evidence of nurse-led case management services targeting older people with multiple chronic conditions in their own homes. This was anticipated to highlight important issues for nursing practice, healthcare policy, service provision and health service research. Enhanced roles for nurses have developed in response to demands for increased efficiency in the provision of healthcare especially in the area of chronic disease management. It is apparent that the evidence to support nurses providing a case management approach for patients with multimorbid chronic conditions in their home environment is ambiguous. A systematic review of the literature. The review was carried out across multiple sources including search and alert engines, electronic databases, relevant journal websites and grey literature. The inclusion criteria applied concentrated on articles in the English language, case management intervention involving nurses providing care in the patients' own home and older people (aged over 65 years) with multiple chronic illnesses. Of a total of 568 papers identified, eight were of relevance and included in the review. The qualitative data derived from this systematic review suggests that access to case management services had a positive impact on the patient, the carer and the healthcare staff particularly the General Practitioner. In contrast the more robust quantitative data does not demonstrate a significant impact on emergency admissions, bed days, nor costs. Further research is needed to understand how case management can most effectively improve service effectiveness for patients and their carers and reduce cost of care. A new emphasis on comparative effectiveness research is required which has the potential to reshape the whole system of healthcare provision for patients with complex needs. [ABSTRACT FROM AUTHOR]

Aims. This paper is a report of a study that examined the effects of work demands, including employment status, work inflexibility and difficulty reconciling work and family caregiving, on role strain and depressive symptoms of adult-child family caregivers of older people with dementia. Background. Family caregivers also employed for pay are known to be affected by work demands, i.e. excessive workload and time pressures. However, few studies have shown how these work demands and reconciliation between work and family caregiving influence caregivers' role strain and depressive symptoms. Method. For this cross-sectional study, secondary data were analysed for 119 adult-child family caregivers of older people with dementia in Taiwan using hierarchical multiple regression. Results. After adjusting for demographic characteristics, resources and role demands overload, family caregivers with full-time jobs (b = 0.25, P < 0.01) and more difficulty reconciling work and caregiving roles (b = 0.36, P < 0.01) reported significantly more role strain than family caregivers working part-time or unemployed. Family caregivers with more work inflexibility reported more depressive symptoms (b = 0.29, P < 0.05). Conclusion. Work demands affected family caregivers' role strain and depressive symptoms. Working full-time and having more difficulty reconciling work and caregiving roles predicted role strain; work inflexibility predicted depressive symptoms. These results can help clinicians identify high-risk groups for role strain and depression. Nurses need to assess family caregivers for work flexibility when screening for high-risk groups and encourage them to reconcile working with family-care responsibilities to reduce role strain. [ABSTRACT FROM AUTHOR]

Aims and Objectives: This study aimed to assess the perceived caregiver burden among parents of chronically ill children in Jordan. Background: Although there are few studies on the accurate prevalence of chronic diseases among Jordanian children, there are a few on the burden of caregiving, which is important because most children with chronic illness rely on their caregivers to perform their daily tasks. In Jordan, little is known about the caregiver burden associated with caring for children with chronic diseases. Design: A cross‐sectional design was reported in line with the STROBE guidelines. Methods: The Katz Index of Independence was used to determine the children's level of dependence, and the Burden Scale for Family Caregivers was used to measure the caregivers' level of burden. Results: Nearly, 49.3% of caregivers had a very severe burden, 31.2% of children had a severe functional impairment, 19.6% had a moderate impairment, and 49.3% had full functionality. Based on their children's dependency, caregivers' subjective burden varied greatly (p <.001). Fully functional children had a far lower disease burden than severely and moderately disabled children (p <.001). The caregiver burden score differed significantly across chronic disease categories (p <.001). Unemployed caregivers had a far higher subjective burden than working caregivers (p =.009), and single (divorced/widowed) caregivers had higher burdens than married caregivers. Conclusions: Various factors can increase caregiver burden. Therefore, healthcare providers must plan holistic and family‐centred interventions to reduce the caregiving burden. Relevance to Clinical Practice: There is a need to establish support programs to help reduce the level of burden among caregivers of children with chronic diseases. [ABSTRACT FROM AUTHOR]

Aims and objectives: To reduce the likelihood of preventable readmissions, the aim was to investigate how older people (with their family members) managed their chronic health conditions at home following hospital discharge. The objectives explored older people and their family members' perspectives on how discharge plans assisted self‐management of their chronic conditions, their recognition of deterioration and when to seek treatment/re‐attend hospital. Background: Chronic conditions have challenged older adults' self‐management, particularly after hospital discharge and can impact on preventable readmission. Few studies have examined patients' and their family members' perspectives on the management of their conditions at home after hospitalisation. Design: A qualitative exploratory design known as Interpretive Description was utilised. Methods: Purposeful sampling involved 27 community‐dwelling older adults; nineteen were discharged patients with one or more chronic health conditions. Eight nominated family members were also recruited to enhance understanding of the older persons' self‐management at home. Interviews were undertaken and thematic data analysis followed the COREQ guidelines. Results: Five themes emerged: (1) Post‐Discharge Advice; (2) Managing at Home; (3) Recognition and Response to Deterioration; (4) Community Care and Support; and (5) The "Burden" on Others of Post‐Discharge Care. Conclusion: Older people sought a clear plan for self‐management at home prior to discharge. This plan should contain potential signs of deterioration and guidance on future action. We found that support given to older people from family and friends was critical to prevent readmission. In addition, their local General Practitioner and Pharmacist played an essential part in the support of their care. For some, social support services were also important. Nurse telephone follow‐up in the week following discharge was mostly absent. However, this strategy would be strongly recommended. Relevance to clinical practice: To mitigate against preventable readmission, we recommend the above strategies to assist the older person at home with self‐management of their chronic conditions. [ABSTRACT FROM AUTHOR]

Aims and Objectives: The aim of this study was to evaluate the clinical features of children with tracheostomy and the predictors of psychological status of their primary caregivers in order to determine the associations between the children's clinical course with their caregivers' psychological status. Background: The caregivers of children with tracheostomy are responsible for providing basic tracheostomy care at home. All these responsibilities may be associated with significant changes in family members' lifestyles, daily routines and family dynamics. Design: This study is a cross sectional study. Methods: Data of the family's socioeconomic status and clinical status of children with tracheostomy were noted in four paediatric pulmonology centers. The Beck Depression Inventory, Maslach Burnout Inventory, Zarit Caregiver Burden Scale, and Rosenberg Self‐esteem Scale were used for psychological measurements of the caregivers. The STROBE checklist was used for this study. Results: Eighty‐five children and their primary caregivers were enrolled in the study. The children's median age was 4.1 years. Thirty‐eight of them were dependent on home ventilators. Twenty‐one had bacterial colonisation. All children's primary caregivers were their mothers. Beck Depression Inventory scores of mothers of children with colonisation were higher. Number of hospitalizations in previous 6 months was related to mothers' emotional exhaustion and depersonalization scores. Duration of children's hospitalizations in previous 6 months was positively correlated to mothers' emotional exhaustion, depersonalization, and Beck Depression Inventory scores. Conclusions: Mothers of children with tracheostomy may experience psychological conditions, such as high levels of depression, burnout, burden and low levels of self‐esteem. Frequent and long‐term hospitalizations of children correlated with mother's depression and burnout. Therefore, primary caregivers should be evaluated and supported psychologically. Relevance to Clinical Practice: Preventing mothers of children with tracheostomy from experiencing psychological conditions such as depression, burnout, burden and low self‐esteem can also increase the quality of care for children. [ABSTRACT FROM AUTHOR]

Aims and objectives: To identify and review the literature on rural mothers’ experiences in caring for a child with a chronic health condition. Background: Families living with a child who has a chronic health condition experience many challenges; these are often amplified for families living in rural areas, where issues such as the distance from services add further challenges the family must manage. Like many children, rural children with chronic health conditions are primarily cared for by their mothers. The additional strain of geography creates its own unique experiences for mothers who need to access the high‐quality care that their child requires. Design: Integrative literature review using the Equator PRISMA guidelines. Methods: A search of databases; Cochrane, CINAHL, Ovid, PubMed, ProQuest Health and Medicine, Informit and Scopus for studies published between 2005–2016 using an integrative review approach. A total of 1,484 studies were identified with an additional six studies found through snowballing. The search resulted in seven studies being meeting the inclusion criteria after using the Critical Appraisal Skills Programme. Results: Data from the seven articles were analysed, and the mothers’ experiences were synthesised into five themes: “struggling for resources,” “barriers in accessing services,” “strain of decision‐making,” “mother's physical and emotional breakdown” and “the daily management of family activities”. These five themes formed the basis of this article. Conclusions: The findings indicate that mothers from rural areas face additional barriers related to their rurality, including transportation difficulties, socioeconomic status and social isolation, and are challenged by limited access to specialty medical services, educators and allied health professionals. The literature review outcome will assist in informing nursing practice through identifying and allocating resources to reduce these barriers; rural mother experience will assist in enabling the child to reach their full developmental potential. Relevance to clinical practice: There is a need for health professionals to understand the challenges and barriers rural mothers face in accessing services. Nurses can assist rural mothers to navigate and access the appropriate services in order to reduce health inequity, increase accessibility to services and reduce rural disadvantage for their child. Nurses and health professionals are in an ideal position to develop future models of care that optimise health outcomes and enable equity and access to services for rural children with chronic conditions similar to those experienced by their urban counterparts. [ABSTRACT FROM AUTHOR]

Aims To present a methodological exemplar of integrating findings from a quantitative and qualitative review on the same topic to provide insight into components of care that contribute to supportive care that is acceptable to men with prostate cancer. Background Men with prostate cancer are likely to live a long time with the disease, experience side effects from treatment and therefore have ongoing supportive care needs. Quantitative and qualitative reviews have been published but the findings have yet to be integrated. Design Integration of quantitative and qualitative synthesized evidence. Data source Two previously published systematic reviews. Review methods Synthesized evidence on supportive care for men with prostate cancer was integrated from two previously published systematic reviews: a narrative quantitative review and a qualitative review with thematic synthesis. These two streams of synthesized evidence were synthesized using concurrent narrative summary. Data from both reviews were used to develop a set of propositions from which a summary of components of care that likely to contribute to supportive care acceptable to men with prostate cancer were identified. Results Nine propositions were developed which covered men's supportive care focusing on the role of health professionals. These propositions were used to compose nine components of care likely to lead to supportive care that is acceptable to men with prostate cancer. Some of these components are no/low cost such as developing a more empathic personalized approach, but more specific approaches need further investigation in randomized controlled trials, for example, online support. Conclusion This methodological exemplar demonstrates the integration of quantitative and qualitative synthesized data to determine components of care likely to lead to provision of supportive care acceptable to men with prostate cancer. [ABSTRACT FROM AUTHOR]

Background: Caregivers of lung cancer patients frequently experience psychological distress and high caregiver burden. Previous studies have focused on caregiver burden for patients with advanced lung cancer, while few studies focused on the caregiver burden among informal caregivers of postoperative patients with early‐stage non‐small cell lung cancer (NSCLC). Objectives: This study aimed to (a) examine caregiver burden for caregivers of patients with early‐stage NSCLC after surgical treatment and (b) identify predictive factors related to caregiver burden of patients with early‐stage NSCLC. Methods: A cross‐sectional study was conducted in a university‐affiliated hospital in Changsha, China. A total of 385 patients with early‐stage NSCLC and postsurgical treatment and their caregivers were included in this study. Caregiver burden was evaluated using the Zarit caregiver burden interview (ZBI). A set of questionnaires was used to assess psychosocial characteristics of participants, including simplified coping style questionnaire, social support rate scale, and hospital anxiety and depression scale. Hierarchical regression analysis was applied to identify factors associated with caregiver burden. We followed STROBE checklist for reporting the study. Results: The average ZBI score was 29.1 ± 11.4. Most caregivers (62.6%) demonstrated mild to moderate caregiving burden. The duration of caregiving (β = 0.18, p <.001), passive coping of caregiver (β = 0.17, p =.001) and anxiety (β = 0.13, p =.007) were significant predictors of caregiving burden. A variance of 17.6% in caregiving burden was explained by these identified factors. Conclusions: Caregivers of early‐stage NSCLC patients experience a mild to moderate level of caregiver burden. The duration of caregiving, passive coping and anxiety are factors associated with caregiver burden. Relevance to clinical practice: Clinicians should provide early care to support new roles of family members as caregivers. [ABSTRACT FROM AUTHOR]

Aims and Objectives: To (i) determine prevalence of distress among caregivers of people living with cancer, (ii) describe caregivers' most commonly reported problems and (iii) investigate which factors were associated with caregivers' distress. Background: The psychological distress associated with a cancer diagnosis jointly impacts those living with cancer and their caregivers(s). As the provision of clinical support moves towards a dyadic model, understanding the factors associated with caregivers' distress is increasingly important. Design: Cross‐sectional study. Methods: Distress screening data were analysed for 956 caregivers (family and friends) of cancer patients accessing the Cancer Council Western Australia information and support line between 1 January 2016 and 31 December 2018. These data included caregivers' demographics and reported problems and their level of distress. Information related to their care recipient's cancer diagnosis was also captured. Caregivers' reported problems and levels of distress were measured using the distress thermometer and accompanying problem list (PL) developed by the National Comprehensive Cancer Network. A partial‐proportional logistic regression model was used to investigate which demographic factors and PL items were associated with increasing levels of caregiver distress. Pearlin's model of caregiving and stress process was used as a framework for discussion. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) checklist was followed. Results: Nearly all caregivers (96.24%) recorded a clinically significant level of distress (≥4/10) and two thirds (66.74%) as severely distressed (≥7/10). Being female, self‐reporting sadness, a loss of interest in usual activities, sleep problems or problems with a partner or children were all significantly associated with increased levels of distress. Conclusions: Caregivers of people with cancer reporting emotional or familial problems may be at greater risk of moderate and severe distress. Relevance to Clinical Practice: Awareness and recognition of caregiver distress are vital, and referral pathways for caregivers are the important area of development. [ABSTRACT FROM AUTHOR]

Aim: The aim of the study was to evaluate the usability of the COPE Index in the assessment of subjective caregiving burden of family caregivers providing care for older people in their home environment. Methods: A cross‐sectional study was conducted among 110 family caregivers. The criterion of including caregivers in the study was their provision of care at home for an older person who needed and received regular long‐term nursing care in their home environment. The study was carried out using the COPE Index questionnaire in assessing the situation of family caregivers. The study was reported according to the STROBE checklist. Results: The mean result of assessment of negative impact of care in the studied group of caregivers was 16.5 ± SD 3.0, positive impact of care – 10.4 ± SD 2.8 and the quality of support – 9.2 ± SD 1.8. A higher level of caregiving burden was found in 58.2% caregivers. The vast majority of the caregivers were women (83.6%). The care was most often provided by the elderly people's children (51.0%), less often by spouses (17.0%), siblings (10.0%), grandchildren (10.0%) and paid caregivers (10.0%). Conclusion: The COPE Index proved to be a useful instrument for routine application in home environment to identify care deficits. Greater caregiving burden of family caregivers of disabled older persons was associated with a higher number of nights devoted to care, growing limitations on professional life, choice to provide care, the caregiver's emotional state, the lack of support in the caregiving role, support from family members and the state of cognitive functions of the care recipient. Relevance to clinical practice: This study may help identify and characterise the profile of family caregivers who are at risk of caregiving burden, and can be used to apply well‐designed activities aimed at reducing their suffering and providing them support. [ABSTRACT FROM AUTHOR]

Aim: To evaluate the progressively lowered stress threshold (PLST) conceptual model as an explanation for behavioural symptoms of dementia and test several of its hypothesized propositions. The PLST model suggests that due to impairments in coping, persons living with dementia have a reduced threshold for stress and respond with more behavioural symptoms of dementia as stress accumulates throughout the day. Design Intensive longitudinal design. Methods: A sample of N = 165 family caregivers completed brief daily diary surveys for 21 days between the dates of 7/2019 and 8/2020, reporting on a total of 2841 days. Dynamic structural equation modelling was used as the analytic technique to examine the impact of caregiver and care recipient environmental stressors on the diversity of behavioural symptoms of dementia to account for the nested data structure and autoregressive relationships. Findings Results show direct relationships between environmental stressors and diversity of behavioural symptoms of dementia that same day and the following day. Conclusion: Findings provide support for the PLST model propositions. Further, findings suggest an extension to the conceptual model is warranted given evidence of an exposure/recovery trajectory and the lagged effects of stress exposure on behavioural symptoms of dementia presentation. Impact This study tested whether a commonly used nursing model does in fact explain the occurrence of behavioural symptoms of dementia. The main findings support using the model as an intervention framework and suggest the model should be adapted to consider recovery trajectories. Since behavioural symptoms of dementia represent complex and dynamic temporal phenomena, traditional longitudinal assessments and analyses are an insufficient measurement modality for testing models. Findings inform the design of environmental‐modification type interventions for behavioural symptoms of dementia management and the methods to evaluate such interventions. [ABSTRACT FROM AUTHOR]

Aim and objectives: To explore the experiences of caregivers of persons with dementia and dementia coordinators regarding their collaboration in care for a person with dementia and the feasibility of using technology in this collaboration. Background: Caregivers of persons with dementia have a significant risk of developing physical strain and psychological stress due to caregiver burden. Internationally, the use of technology is rapidly evolving in health care. Dementia coordinators employed in municipalities in Denmark support caregivers of persons with dementia, thus helping management of life with dementia. The cooperation between dementia coordinators and caregivers is essential, and the use of technology in everyday life is inevitable. Methods: A qualitative, exploratory, descriptive design was used. Data were derived from five focus group interviews in which 13 caregivers and 14 dementia coordinators participated. The participants' narratives were used to elucidate their experiences and attitudes, and data were analysed using thematic analysis. The study reports according to the COREQ checklist. Results: The analysis revealed three themes: the need for creating a safety net in everyday life, the need for moving together in the right direction and the need for handling technology while preserving relational interaction. Conclusions: Technology might be used as a mediator to help ease some caregiving tasks or the burden of caregiving. However, technology is an area in which the caregivers must rely on their competences and initiatives. Even though the collaboration between caregivers and dementia coordinators was beneficial and supportive, dementia coordinators experienced technology as outside the core elements of their daily work. Relevance to clinical practice: We suggest further discussion regarding who is best suited to support caregivers in making choices regarding which technologies to implement in caring for a person with dementia. If this discussion is not taken seriously, there is a risk of leaving caregivers in a technological quagmire. [ABSTRACT FROM AUTHOR]

Background: Older people with cognitive impairment may have lack of understanding of their health and ability to co‐ordinate care needs. Family carers play a key role in supporting older people but the role of family carers in emergency discharge has not been explored well. Objective: To explore and describe the role and contribution of family carers accompanying the older person with cognitive impairment to the emergency department. Design: A exploratory descriptive study was conducted in which telephone interviews were performed. Setting: Three emergency departments located in metropolitan Sydney, Australia; two major tertiary referral centres and one district hospital. The EQUATOR research checklist (COnsolidated criteria for REporting Qualitative research) (COREQ) was used to report the qualitative study. Subjects: Participants were family carers accompanying people aged ≥64 years with cognitive impairment; with non‐urgent triage classifications; English speaking and eligible for discharge home. Semi‐structured telephone interviews were conducted 2 to 4 weeks after the older person was discharged. Data were reflexively thematically analysed in NVIVO independently by three researchers. Results: Twenty‐eight interviews were conducted. Three key themes were evident: (1) 'communicating knowledge of the older person's health status and usual behaviour'; (2) 'providing advocacy, translation, surrogacy and care co‐ordination'; and (3) 'ensuring safe transition from the emergency department to home'. Conclusions: Study findings detailed how family carers created an important safety net while the older person was in emergency, through advocacy and the communication of vital health information. More importantly, their knowledge influenced the healthcare management of the older person and ensured safe discharge and co‐ordination of care in the community. Relevance to clinical practice: The study identified for older persons with cognitive impairment a safe stay in the ED and transition home from hospital was supported by family carers and assisted to ensure that discharge information was understood and adhered to optimise wellbeing and prevent adverse outcomes. The findings of this study can inform discharge processes for nurses, nurse practitioners and doctors. Additionally, processes to support family carer engagement would optimise older person compliance and better inform healthcare decision‐making and choice for older peoples, family carers. The findings of the study should inform discharge processes to minimise risk of readmission, financial burden and harm. [ABSTRACT FROM AUTHOR]

Aims and Objectives: To explore experiences of daily living and identify rehabilitation needs in patients and caregivers living with myeloproliferative neoplasms. Background: Myeloproliferative neoplasms are chronic haematological cancers. Studies report a high symptom burden but little is known about supportive care and rehabilitation for this patient group. Design: Qualitative study with a phenomenological approach using focus group interviews to gather knowledge about the participants' lived experiences. Methods: Forty‐eight patients and seven caregivers attending a 5‐day rehabilitation course were interviewed in 12 focus groups. Systematic Text Condensation was used to analyse the interviews. Reporting adhered to COREQ. Results: Two main themes for patients were found: The loss of choice and identity due to the need to prioritise energy and The schism of being a person but also a patient. Patients described how living with myeloproliferative neoplasms meant having to prioritise energy and, therefore, losing freedom to choose activities. This changed their identity and impaired their quality of life. Patients of working age seemed to struggle the most in balancing the disease, family, social relationships and work. One main theme was found for caregivers: Influence of the disease. Caregivers reported how the disease limited their social lives, that the disease brought psychological strain, extra work, and that communication between couples was impaired. When both patients and caregivers participated in rehabilitation courses, they reported better understanding between couples and more open conversations. Rehabilitation needs identified were mainly in relation to psychosocial support and patient education, although needs varied across patients and caregivers. Conclusions: Patients and caregivers expressed difficulties in adjusting to the lives the disease enforced upon them. Our findings indicate that myeloproliferative neoplasms patients and their caregivers would benefit from a combined model of psychosocial support, patient education, peer support and rehabilitation interventions based on an individual needs assessment. Relevance to clinical practice: Nurses can be responsible for individual needs assessments and refer patients and caregivers to suitable supportive care and rehabilitation interventions. Trial registration details: The study was approved by the Danish Data Protection agency (J.nr. 2008‐58‐0035). [ABSTRACT FROM AUTHOR]

Aim: To develop a comprehensive understanding of resilience and its associated factors among informal caregivers of people with heart failure. Design: Transnational multicentre convergent mixed methods approach. Methods: This study was conducted in three European countries: Italy, Spain and the Netherlands; during February 2017 and December 2018. In total, 195 caregivers completed the Connor–Davidson Resilience Scale, Caregiver Burden Inventory and Hospital Anxiety and Depression Scale. From a nested sample 50 caregivers participated in semi‐structured face‐to‐face interviews. Data were analysed using qualitative content analysis, multiple regression and joint displays. Results: The caregivers' mean age was over 60 years. The quantitative results showed that caregivers experienced anxiety and depression regardless of a good score of resilience and moderate level of burden. Regression analysis showed that the resilience was associated with caregiver depression. From qualitative findings three resilience inhibiting (psychological outlook, physical weariness and affective state) and two promoting factors (community interconnectedness and self‐comforting activities) were generated. Mixed analysis confirmed that depression decreased caregivers' resilience. Conclusions: Caregivers of people with heart failure experience continuous stress and anxiety resulting in reduced resilience. Collaborative efforts are needed to build multifaceted interventions and programs to enhance caregivers' resilience by targeting the factors identified in this study. Impact: The quality of informal caregiving is affected by the resilience of caregivers. No research has explored the resilience levels and its factors in this population. Depression, psychological outlook, physical weariness and affective state are negative factors of caregivers' resilience. Personal strategies combined with social and community support and belongingness enhance caregivers' resilience. Community care organizations and hospitals could establish alliances to develop programs for enhancing caregivers' resilience. [ABSTRACT FROM AUTHOR]

Aim To report an analysis of the concept of respite for older people. Background Respite is an important support strategy for family carers of older people. However, there is considerable confusion in the literature about the nature, scope, and outcomes of respite services. Data sources The data source for the concept analysis was a review of literature addressing respite for older people. There were no publication date restrictions for the review and literature was searched up to 2010. Design Concept analysis that was informed by the work of Dubin and the operationalization of Dubin's work by Holton and Lowe. Review method A review of the literature was undertaken to better understand the nature of respite for older people. The review investigated the views of respite from the perspective of the service provider, family carer, and care-recipient. A conceptual model of respite was developed using a four-step approach: gaining an understanding of the phenomenon; identifying and retrieving relevant studies; analysing the construct; and developing the conceptual model. Results The conceptual model that emerged from this process consisted of three attributes, Partnership, Service, and Respite. The attribute of Partnership concerned the relationship between the service provider, carer and care-recipient. The attribute of Service concerned what the provider offered and focused on two important areas, assistance and engagement. The attribute of Respite concerned the outcomes that the family carer and care-recipient gained from respite and focused on freedom, support, and connection. Conclusion The conceptual model provides a framework to assist in the development of respite services. [ABSTRACT FROM AUTHOR]