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Aim: To review the international evidence base on interventions to support the mental health of family carers of children with brain injuries in low and middle income countries (LMIC). Methods: Searches were conducted with five electronic databases (Pubmed, Web of Science, Embase, PsycINFO, CINAHL) using search terms related to "family carers", "brain injury", "children" and "low and middle income countries". Studies were independently screened using predetermined eligibility criteria by two authors. Data were extracted from included studies using standardised data extraction and quality appraisal tools. These data were then subjected to narrative synthesis. The Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines were used to govern the review process. Findings: One study met our inclusion criteria and described an acquired brain injury called nodding syndrome which occurs in Sub-Saharan Africa. The study was conducted in Ghana and provided group-based psychotherapy to carers and their children. As such we found no study which sought to solely support the mental health of family carers. Conclusions: There has been a lack of focus in the literature on the mental health of family carers of children with brain injuries in LMIC. Considering the vital importance of caregivers in supporting their children it is imperative that service providers and researchers devise programmes to better meet their needs. The mental health of family carers should be better supported to improve their overall wellbeing, which will in turn improve the wellbeing of their children. [ABSTRACT FROM AUTHOR]

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

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

Aims: To outline and examine evidence related to the meaning of 'psychosocial vulnerability' among caregivers of persons with chronic illnesses. Background: The number of informal caregivers continues to rise globally. Their risk of psychosocial vulnerability is frequently overlooked, but understanding their psychosocial vulnerability may offer insights into meeting their needs. Design Scoping review following the PRISMA 2020 extension guidelines. Data sources The databases CINAHL, Embase, Medline/Pubmed, Cochrane Library, PsycINFO, Web of Science, Google Scholar, Lenus and ProQuest were systematically searched to identify original research. No date limit was set, and 23 studies were included. Review methods: A five‐step approach using the Arksey and O'Malley framework. Thematic analysis guided data analysis. Results: Carers' psychosocial vulnerability occurs when they experience barriers to resources while access and use of supports reduce risk. Antecedents of psychosocial vulnerability include a carer's age and sex, socioeconomic status and their health and wellbeing. Psychosocial vulnerability affects carers' relationships and causes personal losses. Conclusions: The concept of carers' psychosocial vulnerability is complex. Recognition of carers at risk for psychosocial vulnerability would help nurses direct relevant support and information to carers who need it most. Summary statement: What is already known about this topic? Carers play an increasingly important role in the delivery of holistic care in the community.Barriers and access to relevant support and homecare remain an issue for carers and patients worldwide.Caregivers frequently succumb to vulnerability as a result of their new identification with the role as well as the duty tied to the role. What this paper adds? Findings offer an understanding of factors which may contribute to carers' psychosocial vulnerability.An overview of the impact of caring for individuals with a chronic illness on carers' lives. The implications of this paper Recognition of those at risk for psychosocial vulnerability could enable health care professionals to provide the relevant support and information to carers who need it most.Further qualitative research is needed to increase understanding of carers' experience of caring for someone with a chronic illness.Carers must be seen as essential components of healthcare in order to ensure connection between policy and service delivery. [ABSTRACT FROM AUTHOR]

The dyadic relationship of people living with dementia and their family carers is highly relevant when considering the stability of home-based care arrangements. There is a solid body of research that covers issues related to dyadic relationships. However, a synthesis of qualitative research is missing. Therefore, the aim of this review is to give an overview of the dyadic relationship, with the leading research question of what influences the dyadic relationship and how it can be maintained during the trajectory of the disease. We performed an umbrella review of qualitative literature on the basis of thematic synthesis and used the SoCA-Dem theory as a theoretical framework. Literature searches in the databases PubMed (MEDLINE), CINAHL, Scopus, and PsycInfo were performed from July to September 2020, additional papers were included until September 2022. We searched without timeframe restrictions and considered publications in English or German. After a systematic database search, resulting in 1325 records, we included 12 reviews. Five analytical themes and 11 subthemes were identified. The analytical themes were 'change in the relationship', 'activities to maintain the relationship', 'continued togetherness', 'home as a place for enacting relationship', and 'influencing factors'. The dyadic relationship is a complex and multifaceted phenomenon. It is characterized by family carers' attempts to continue togetherness using different strategies and is mainly influenced by the quality of the premorbid relationship and the mindset of the family carer. [ABSTRACT FROM AUTHOR]

Despite the lively discussion on the pros and cons of using robots in health care, little is still known about how caregivers are affected when robots are introduced in their work environment. The present scoping review fills this research gap by mapping previous studies about the relation between robots in care and caregivers' working life. The paper is based on searches in four databases for peer-reviewed articles about robots in care settings, published 2000 to 2020. The 27 included papers were examined with the questions of 1) how robots are used by caregivers, and 2) how robots affect caregivers' work environment. The analysis shows that the use of robots can affect both the physical and the psychosocial work environment, in positive as well as in negative ways. Robots are used in care settings to reduce physical and mental demands of the caregivers, but they can, in fact, increase caregivers' workload. Thus, the review indicates that robots can improve the quality of work, but that they seldom work as a shortcut to increased efficiency or time effectiveness. [ABSTRACT FROM AUTHOR]

Background: Recent research identified the issue that family carers of people with diabetes at the end of life (EOL) did not receive sufficient information to enable them to help their relative manage their diabetes at the EOL. Aim: The aim of the current study was to undertake a literature review to identify the information needs of family carers of people with diabetes at the EOL. Method: A comprehensive review of the literature was conducted by searching the following databases: CINAHL, PubMed, PsychInfo, Scopus, and SocINDEX. The grey literature was also searched for papers relevant to the aim. All study designs were included. A content analysis of relevant papers was undertaken to identify themes. Results: Sixteen of the more than 300 papers identified addressed the information needs of family carers of people with diabetes at the EOL and were included in the review. Five key themes were identified from the papers reviewed: (1) performing diabetes care tasks, (2) focus of care, (3) blood glucose management, (4) EOL stages, and (5) involving patients and family carers in decisions about diabetes care. Most of the 16 papers represented the views of health professionals and focused on the need to provide information about the medical aspects of diabetes management. Conclusions: The review suggests further research is needed to identify the information needs of family carers of people with diabetes at the EOL to enable interventions to be developed to support the family carers and meet their unique information needs. [ABSTRACT FROM AUTHOR]

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Objectives: This systematic review and meta‐analysis aimed to determine the prevalence of loneliness and social isolation among informal carers of individuals with dementia and to identify potential influencing factors. Methods: We conducted a comprehensive search across 10 electronic databases, including PubMed, Cochrane, Embase, Web of Science, PsycINFO, CINAHL, Scopus, Chinese Biomedical, China National Knowledge Internet, and WANFANG. Our search strategy covered the inception of the databases up to September 16, 2023, with an updated search conducted on March 8, 2024. Prevalence estimates of loneliness and social isolation, presented with 95% confidence intervals, were synthesized through meta‐analysis. Subgroup analyses and meta‐regression were employed to explore potential moderating variables and heterogeneity. Results: The study encompassed 27 research papers involving 11,134 informal carers from 17 different countries. The pooled prevalence of loneliness among informal carers of individuals with dementia was 50.8% (95% CI: 41.8%–59.8%), while the pooled prevalence of social isolation was 37.1% (95% CI: 26.7%–47.6%). Subgroup analyses and meta‐regression indicated that various factors significantly influenced the prevalence of loneliness and social isolation. These factors included the caregiving setting, study design, the intensity of loneliness, geographical location (continent), data collection time, and the choice of assessment tools. Conclusions: This study underscores the substantial prevalence of loneliness and social isolation among informal carers of individuals with dementia. It suggests that policymakers and healthcare providers should prioritize the development of targeted interventions and support systems to alleviate loneliness and social isolation within this vulnerable population. Key points: Informal carers of people with dementia contend with unique circumstances that render them susceptible to both loneliness and social isolation.There is a significant prevalence of loneliness and social isolation in informal carers of individuals with dementia.Several significant moderators influence the prevalence of loneliness and social isolation among informal carers of individuals with dementia.Moderator analysis can guide targeted interventions and support systems for at‐risk informal carers of people with dementia to alleviate loneliness and social isolation. [ABSTRACT FROM AUTHOR]

Aim: To identify fathers' perceptions and experiences of caring for their children with congenital heart disease. Design A qualitative systematic review. Data sources PubMed, Clinical Key, the Joanna Briggs Institute Evidence‐based practice database, CINAHL Complete, Embase and PsycINFO were searched for all journal articles published before May 2020. Review methods: After applying the selection criteria, five studies were identified reporting on fathers with children between 1 month and 12 years. The quality of the articles was evaluated. Results: Six main themes regarding fathers' perceptions and experiences of caring for their children with congenital heart disease were identified: (1) lack of disease knowledge, (2) responsibility to the family and emotional suppression, (3) gratitude for the sustained life of their children, (4) acceptance of being different from others, (5) regrouping and planning for the future and (6) the struggles of father–child relationships. Conclusion: In caring for their children with congenital heart disease, fathers are akin to a suffering warrior, full of hardship. With a self‐imposed sense of responsibility and suppressed emotions, fathers may feel lonely and hurt, but they must fight for their families and children. Summary statement: What is already known about this topic? Congenital heart disease is one of the most common chronic illnesses in childhood.Parents of children with congenital heart disease face cardiac‐related medical problems, decision‐making and economic circumstances throughout their healthcare experience including impact on their physiological and psychological health.Previous studies have focused on the roles of mothers of children with congenital heart disease. What this paper adds: This systematic review identifies six themes regarding fathers' perceptions and experiences of caring for their children with congenital heart disease: (1) lack of disease knowledge, (2) responsibility to the family and emotional suppression, (3) gratitude for the sustained life of their children, (4) acceptance of being different from others, (5) regrouping and planning for the future and (6) the struggles of father–child relationships.In caring for their children with congenital heart disease, fathers are akin to a suffering warrior, full of hardship.With a self‐imposed sense of responsibility and suppressed emotions, fathers may feel lonely and hurt, but they must fight for their families and children. The implications of this paper: The findings about fathers' perceptions and experiences of caring for their children with congenital heart disease can be beneficial in improving nursing practice.Health care professionals need to actively involve and support fathers in caring for their children with congenital heart disease. [ABSTRACT FROM AUTHOR]

It is well documented that there is a shortage of mental health care providers, mental health literacy, and underutilization of mental health services in Pakistan. This systematic review aimed to assess the available evidence on factors hindering and/or facilitating access to care among people with mental health issues, health care providers, carers, or any other population group (e.g., students, teachers) in Pakistan. Thirteen published studies of barriers and facilitators in Pakistan were identified through nine electronic databases: Ovid MEDLINE, Ovid Embase, Ovid Emcare, CINAHL plus, Proquest Central, PsycInfo, Scopus, Pubmed, and ScienceDirect. Thematic analysis revealed that factors facilitating access to mental health services were trust in the effectiveness of mental health services and acknowledging the seriousness of the problem. However, factors hindering the access were financial issues/constraints, personal issues/other priorities, stigma, low mental health knowledge, side-effects/dissatisfaction from previous treatments, time and distance constraints, reliance on traditional/religious healers, and lack of social (i.e., family and peers) support/encouragement. Findings suggest the need for reducing barriers to and enhancing facilitators of seeking mental health services. To improve help-seeking, the focus of strategies should be on enhancing mental health literacy, lowering stigma, and increasing trust in mental health services' effectiveness. What is known about this topic? There is a scarcity of empirical evidence on mental health and its correlates in Pakistan-a developing country and mental health services are restricted to psychiatry departments of teaching hospitals or in privately run clinics. There is a scarcity of psychiatrists in rural areas having 60% population and there is a need for recognizing facilitators and reducing barriers to reasonable mental health care is crucial. What the paper adds: Factors facilitating access to mental health services were trust in the effectiveness of mental health services and acknowledging the seriousness of the problem. Factors hindering the access were financial issues/constraints, personal issues/other priorities, stigma, low mental health knowledge, side-effects/dissatisfaction from previous treatments, time and distance constraints, reliance on traditional/religious healers, and lack of social (i.e., family and peers) support/encouragement. This recognition can help to design adequate programs and policies for people with mental health issues. There is a need to raise public awareness of the importance of seeking mental health services as well as for designing, testing, and executing strategies to reduce self and social stigma related to mental health problems. [ABSTRACT FROM AUTHOR]

Aim: To synthesize and present the currently available literature on the experiences of spousal and adult child caregivers of stroke patients in transitional care. Design: This is a qualitative systematic review. Data Sources: Eight electronic databases (PubMed, CINAHL, Cochrane, Embase, Web of Science, PsychINFO, ProQuest and Scopus) were searched from September 2020 to April 2022 for relevant literature and grey literature. Qualitative studies exploring the experiences of sspousal or adult child caregivers of stroke survivors up till 1 year after discharge were included. Review Methods: The selection of articles was done by two independent reviewers who screened the titles and the abstracts of studies, and the full texts of selected articles. Quality appraisal and data extraction of selected articles were undertaken by two independent reviewers using Joanna Briggs Institute (JBI) critical appraisal tools. Data synthesis was conducted using a meta‐aggregative approach recommended by JBI. Results: A total of 19 papers were included in this review. A total of three synthesized findings centred around caregivers' experience with healthcare professionals, changes in their life roles and needs, effects of caregiving and how they adapted to their changes were aggregated. Conclusion: Spousal and adult child caregivers faced multiple barriers during transitional care, such as the lack of resources and an inability to cope with changes in their lives. Support and adequate preparation were key facilitators in easing stroke caregivers into their role. Impact The findings from this review can be used to guide future implementations of caregiver education programmes and comprehensive discharge planning for stroke survivors. [ABSTRACT FROM AUTHOR]

Introduction: Cancer patients and caregivers have myriad unmet needs which can have detrimental consequences on their psychosocial wellbeing. This systematic review aims to identify the unmet supportive care needs of immigrant and native Chinese cancer patients and caregivers. Methods: We systematically searched various electronic databases (e.g. Scopus, CINAHL, PsycInfo, etc.) from the earliest date available until January 2018. Additional studies were identified through reference lists and citation tracking. Eligibility criteria included: (a) qualitative, quantitative and/or mixed methods studies published in English; (b) immigrant and native Chinese cancer patients and/or caregivers (age ≥18 years); (c) unmet needs and/or their correlates. Studies were assessed for their risk of bias, and a narrative synthesis of findings was performed. Results: Forty‐seven papers from 45 studies met eligibility criteria. The most prevalent area of unmet needs was health system and information. Patients most commonly desired one member of the hospital to talk to about all aspects of their care. Caregivers preferred information about the patient's prognosis and likely outcome. Anxiety was most commonly associated with higher levels of health system and information needs. Conclusion: Chinese patients and caregivers experience a range of unmet health system and information needs, which differ depending on their stage along the cancer trajectory. [ABSTRACT FROM AUTHOR]

Purpose: Individuals with intellectual disability(ies) are living longer contributing to an overall increase in the average age of caregivers. The purpose of this paper is to review the literature on the physical, social and psychological needs of ageing carers of individuals with intellectual disability(ies) in the UK. Design/methodology/approach: A scoping review framework was used to identify literature from eleven databases, the grey literature and the references lists of relevant studies. Only primary research studies that discussed the needs of non-professional carers, aged 65+ years old, of individuals with intellectual disability(ies) in the UK were included. No date restrictions were applied. Thematic analysis was used to narratively synthesise findings. Findings: Six studies were included. Five key themes were identified: Living with fear, lack of information, rebuilding trust, proactive professional involvement and being ignored. Housing and support information is not communicated well to carers. Professionals require more training on carer needs and trust must be rebuilt between carers and professionals. Proactive approaches would help identify carer needs, reduce marginalisation, help carers feel heard and reduce the risk of care crisis. Greater recognition of mutual caring relationships is needed. Originality/value: This review highlighted the needs of older caregivers for individuals with intellectual disability(ies) as well as the need for more high-quality research in this field. The information presented in this review may be considered by primary care providers and funding bodies when planning future support for this growing population of carers. [ABSTRACT FROM AUTHOR]

Aims and objectives: To establish an understanding of healthcare professionals' dementia knowledge and attitudes towards dementia care, and family carers' perceptions of dementia care in China. Background: Healthcare professionals and family carers of people with dementia deliver most of the dementia care in China. However, little research on healthcare professionals' dementia knowledge and attitudes towards dementia care, and family carers' dementia care perceptions has been conducted in China. Methods: An integrative review was conducted and reported based on the PRISMA guidelines and Whittemore and Knafl's framework. Eight English databases were searched without date restriction: CINAHL Plus with Full Text, MEDLINE, PubMed, Web of Science, Cochrane Library, Embase, PsycINFO and Scopus; and three Chinese databases: China National Knowledge Infrastructure, Chongqing Weipu and Wanfang, plus a manual search of reference lists. Results: Thirty‐eight primary research papers were included in the review. Three themes were identified from the synthesis: (a) knowledge and competency; (b) attitudes towards dementia care; and (c) carers' burden and unmet needs. Healthcare professionals' dementia knowledge ranged from low to moderate levels and attitudes towards dementia care were generally negative. With low levels of knowledge of dementia and negative attitudes including stigma, family carers were under stress with insufficient support, and they expected more support from community nurses. Conclusions: There is an apparent need for a national policy on healthcare professional education and training to improve dementia care practice in China. Such a policy may improve support services for family carers. Relevance to clinical practice: Nurses, and particularly community nurses, are well‐positioned to support family carers in China. However, healthcare professionals in China are not prepared for this. Therefore, education and training on dementia care should be integrated into medical and nursing undergraduate programmes and provided for healthcare professionals after commencing employment, and strategies to reduce stigma are needed. [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]

Background: Although people with dementia receive substantial care from informal sources, there is limited research available that investigates how these carers experience end-of-life care. Aim: This review aimed to identify what is currently known about carers' experiences of providing end-of-life care to a family member or friend with dementia and draw implications for palliative care policy and service provision. Design: A scoping literature review was conducted, first using a targeted key word search, followed by assessments of eligibility based on title and then abstract content. Data sources: Records were sourced through PsycINFO, PubMed and CINAHL databases. Peer-reviewed papers published between 2000 and 2016, reporting on data collected directly from carers, were included for review. Results: Carers' experience centred on relationships (with care recipients, family and friends and health care professionals) and the specific context of caring for someone with dementia. These broad categories of carers' experiences had clear influences on them personally, particularly in relation to their sense of self and their wellbeing. Conclusion: Palliative care services would benefit from ensuring holistic approaches to supporting people with dementia, their carers and wider family networks. Tailoring services to the specific context of dementia would enable effective, personalised support throughout extended periods leading up to care recipient death as well as through the challenges faced beyond bereavement. [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]

The care of people with dementia within the hospital setting is challenging for healthcare professionals. Hospital design and services are not optimized for people with dementia, owing to the lack of preparation of healthcare professionals and the busy environment of the acute hospital. The peri-operative environment may present particular difficulties but little is known about the experience and care of people with dementia in this setting. The aim of this review was to examine the care of surgical patients who have dementia and their family members in peri-operative environments and describe strategies adopted by healthcare professionals. A systematic search of the following databases was completed: BNI, CINAHL, PubMED and PsychINFO in accordance with PRISMA guidelines. Data were extracted and analysed within a thematic analysis framework as described by Braun and Clarke. Ten papers based on eight studies were included, five (n = 355,010 participants) containing quantitative data and five reporting qualitative data (n = 395 participants). People with dementia who go undergo surgery experienced higher adverse post-operative outcomes such as respiratory problems or urinary tract infections. The key elements in surgical care for people with dementia included: health assessment throughout the surgical trajectory (pre-, intra- and post-operative) and the resources used by healthcare professionals in the peri-operative care. Healthcare professionals reported difficulties in the completion of health assessments due to the cognitive status of people with dementia and a lack of skills in dementia management. The use of restraints was still a common practice and a source of conflict. Dementia-specific training and guidelines focused on the care of surgical patients who have dementia in peri-operative environments are required to improve care and post-operative outcomes. More research is required to develop effective interventions to improve care and decrease the risk of complications for people with dementia in the peri-operative care environment. [ABSTRACT FROM AUTHOR]

• Families of people entering and living in residential aged care settings have complex and dynamic bereavement care needs, and there is paucity of evidence-based bereavement support intervention, specifically focussed on this population. • The quality of care provided to an older person at the end of their life and after death care can influence family caregivers' grief reactions. • The aged care workforce should consider the complexities involved in decision-making strategies that support death preparedness and bereavement support as a part of care planning and provision. • There is a need for government agencies and research entities to work together in developing and implementing a comprehensive approach to grief, loss, and bereavement care, focussing on the residential aged care sector. The grief, loss and bereavement needs of the families of those living and dying in residential aged care setting is not very well understood. This systematic review examines grief, loss, and bereavement experience of, and interventions relating to, family caregivers of those entering, living and dying in residential aged care. Out of 2023 papers that were identified, 35 met the inclusion criteria which included (n=28) qualitative and (n=7) quantitative intervention studies. The qualitative findings indicated quality of care provided to the resident at the end of their life, and after death care influenced family caregivers' grief reactions. The intervention studies revealed that educational interventions have the potential to lead to some benefits in the context of grief loss and bereavement outcomes. Recognizing the emotional experiences and support needs of families and carers may enhance the understanding of the ageing, caring, dying, grieving pathway for older people and their families. [ABSTRACT FROM AUTHOR]

• High prevalence of involuntary treatment among community-dwelling older persons with dementia. • Specific caregiver and care recipient factors associated with involuntary treatment. • Urgent need for proactive measures and targeted interventions to enhance care quality. This systematic review and meta-analysis aimed to ascertain the prevalence of involuntary treatment among community-living older persons with dementia and explore associated factors. We comprehensively searched seven electronic databases (PubMed, Embase, Cochrane Library, Web of Science, CINAHL, PsycINFO, and Scopus) from their inception to October 17, 2023, with an update conducted on April 1, 2024. Meta-analysis synthesized prevalence estimates of involuntary treatment and its three subcategories, with 95% confidence intervals. This study included 11 research papers involving 12,136 community-dwelling individuals with cognitive impairment and dementia from 19 countries. The pooled prevalence of involuntary treatment among community-dwelling older persons with dementia was 45.2% (95% CI: 33.7−60.5%). Subcategories included physical restraints (9.8%, 95% CI: 5.1−18.8%), psychotropic medication (19.1%, 95% CI: 13.6−26.9%), and non-consensual care (34.3%, 27.6−42.7%). Factors influencing involuntary treatment were categorized as caregiver-related and care recipient-related. This study underscores the prevalent use of involuntary treatment among community-dwelling older persons with dementia, emphasizing its association with specific caregiver and care recipient factors. Addressing these findings underscores the importance of proactive measures and targeted interventions to improve the quality of care for this vulnerable population. [ABSTRACT FROM AUTHOR]

Introduction: Over 200,000 Americans diagnosed with young onset dementia (YOD), dementia diagnosed prior to age 65, are cared for by family members. This can be costly to caregivers' physical and psychological health. Some adapt well to the caregiver role and are said to be resilient. Aim/Question: This paper builds on current understanding of the concept of resilience and applies this to caregivers of partners diagnosed with YOD. Method: Concept analysis. Results: Resilient caregivers exhibit attributes including determination, flexibility, positive thinking, self-efficacy, resourcefulness, social support and spirituality. Discussion: YOD affects caregiver's health. Much research has been done on interventions for dementia caregivers. These interventions do not necessarily meet the needs of YOD caregivers as they do not account for dynamics in the family. By recognizing what is resiliency in YOD caregivers, interventions can be developed that focus on characteristics that build these attributes. Implications for Practice: Understanding the concept of resilience related to caregiving for a partner diagnosed with YOD allows for future development, measurement, and evaluation of nursing interventions. Nursing staff are in a strategic position to provide effective interventions to enhance resilience among caregivers of YOD. [ABSTRACT FROM AUTHOR]

Background and Objectives Grandparenting trends have been increasing due to rises in female employment, economic stressors, and single-parent families. Because the level of grandparental involvement could either result in beneficial or adverse physical and mental health outcomes, this review aims to use a social–ecological model to compare the childcare experiences of primary and nonprimary grandparent caregivers and the effects of childcare on their physical and emotional health. Research Design and Methods This is a systematic review. CINAHL, Embase, PsycINFO, PubMed, and Scopus were searched for qualitative papers. A thematic analysis was conducted, and data were framed using the social–ecological model. Results Seventy-four qualitative studies were included. Four themes were generated: intrapersonal: attitudes and motivations (obligation and sense of responsibility, limited physical health, and emotional resources), interpersonal: relationships with grandchildren and adult children (grandparental roles and gendered differences, forging bonds with grandchildren, role ambiguities, conflicts and drawing boundaries, and support and relationships with others), organizational: social services and educational needs, and policy: financial and legal issues. Grandparental well-being is likely to be dependent on the context of the childcare provided, relational bonds with adult children and grandchildren, and the availability of a community and institutional, legal, and financial support. Discussion and Implications The act of grandparenting is laden with cost and reward. To ensure a better quality of life in grandparents' later years, joint efforts between policymakers, educators, and organizations are required to meet their childcare support needs such that they can fulfill their grandparenting roles with ease. [ABSTRACT FROM AUTHOR]

Objectives: To synthesize interventions designed to enhance resilience in family caregivers (FCs). Methods: Electronic databases including PubMed, CINAHL, PsycINFO, and Scopus, were searched using index and keyword methods for articles published before January 2020. The review process followed the PRISMA review guidelines. Study quality was assessed using the Mixed Methods Appraisal Tool (MMAT). Results: Six studies (seven articles) were included in this review. Quantitative evidence supports the benefits of psychoeducation, mindfulness-based intervention, and cognitive behavioral therapy (CBT)-based intervention but not expressive writing in improving in FCs' resilience. Four of the six included studies were randomized controlled trials. All included studies only met 40% to 60% of the MMAT criteria, indicating low to moderate levels of study quality. Conclusion: This review showed emerging evidence that psychoeducation, mindfulness-based intervention, and CBT-based intervention may improve caregiver resilience. However, it remains unclear which intervention and what dosage is the most effective in promoting FCs' resilience. Due to the small number of relevant studies and a low-to-moderate level of overall study quality, more rigorous clinical trials are needed to strengthen the current limited evidence base for FC resilience interventions. [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]

Purpose: This study explored tools to measure service experiences for families of older adults living in long-term care facilities, with the goal of suggesting directions for developing service experience measurement indicators for these families in the Korean context. Methods: In this scoping review, English-language literature on the service experiences of families of older adults in long-term care facilities published in academic journals from January 1990 to December 2021 was reviewed. The CINAHL, Embase, and PubMed databases were searched. The review process involved identifying the research question; searching for relevant published studies; selecting studies; mapping the data; and collating, summarizing, and reporting the results. This method helped identify knowledge gaps, explore, and define key concepts, and obtain an overview of extant studies' focus by determining the literature scope. Among 118 articles, seven were finally selected according to predetermined criteria. Results: Through an analysis of the sub-factors of the tools used in the seven selected articles, the following themes were derived: environment, information and family member involvement, tailored care, respect, and responsive workforce. Concept definitions were clarified and examined. Conclusion: Measuring the service experiences of families serving as surrogates for older adults who are in long-term care facilities and cannot express their opinions is essential for improving service quality. Developing a measurement tool for experiences of facility service experience that accurately reflects the perspectives of family members of older adults in these facilities in the Korean context is a pressing need given South Korea's rapidly aging population. [ABSTRACT FROM AUTHOR]

There is evidence to suggest that social support may be an important resource for the mental and physical health of caregivers and children affected by HIV/AIDS, especially in HIV-endemic areas of the developing world. Drawing from theory on social relations and health, in this paper we argue that it is important to assess not only the existence and direction of associations, but also the effects and processes explaining these. We refer to House et al's (in Annu Rev Sociol 14;293-318, ) theoretical framework on social support structures and processes as a guide to present and discuss findings of a systematic review of literature assessing the relationship between social support and health among caregivers living with HIV or caring for HIV/AIDS-affected children. Findings confirm the importance of social support for health among this population, but also expose the absence of empirical work deriving from the developing world, as well as the need for further investigation on the biopsychosocial processes explaining observed effects. [ABSTRACT FROM AUTHOR]

Background: Most adults with chronic conditions live at home and rely on informal caregivers to provide support. Caregiving can result in negative impacts such as poor mental and physical health. eHealth interventions may offer effective and accessible ways to provide education and support to informal caregivers. However, we know little about the impact of Web-based interventions for informal caregivers of community-dwelling adults with chronic conditions.Objective: The purpose of this rapid evidence review was to assess the impact of Web-based interventions on mental health, general caregiving outcomes, and general health for informal caregivers of persons with chronic conditions living in the community.Methods: A rapid evidence review of the current literature was employed to address the study purpose. EMBASE, MEDLINE, PsychInfo, CINAHL, Cochrane, and Ageline were searched covering all studies published from January 1995 to July 2016. Papers were included if they (1) included a Web-based modality to deliver an intervention; (2) included informal, unpaid adult caregivers of community-living adults with a chronic condition; (3) were either a randomized controlled trial (RCT) or controlled clinical trial (CCT); and (4) reported on any caregiver outcome as a result of use or exposure to the intervention.Results: A total of 20 papers (17 studies) were included in this review. Study findings were mixed with both statistically significant and nonsignificant findings on various caregiver outcomes. Of the 17 included studies, 10 had at least one significant outcome. The most commonly assessed outcome was mental health, which included depressive symptoms, stress or distress, and anxiety. Twelve papers examined the impact of interventions on the outcome of depressive symptoms; 4 found a significant decrease in depressive symptoms. Eight studies examined the outcome of stress or distress; 4 of these found a significant reduction in stress or distress as a result of the intervention. Three studies examined the outcome of anxiety; 2 of these found significant reductions in anxiety. Other significant results of the interventions were seen in the outcomes of caregiver gain (ie, positive aspects of caregiving), knowledge, bonding, reduction of anger-hostility, and negative mood. Based on this review, it is not possible to determine which interventions were most effective since studies differed in their design, sample, and intervention. Study results suggest that Web-based interventions may result in reduced depressive symptoms, anxiety, and stress or distress among informal caregivers of adults with chronic conditions in the community.Conclusions: This is the first review assessing the impact of Web-based technologies on mental health, general caregiving outcomes, and general health for caregivers of adults with chronic conditions living in the community. Further rigorous research is needed that includes adequately powered studies examining the critical components of the intervention and the dosage needed to have an effect. [ABSTRACT FROM AUTHOR]

Purpose: Caring for older adults with Alzheimer's disease and related dementias (ADRD) is a significant challenge for partner caregivers (i.e., committed, married, or cohabiting individuals). Understanding partner caregivers' needs is crucial to promote their well-being during the disease trajectory. The concept of resilience may help explain how ADRD partner caregivers manage in the face of significant challenges. The purpose of the current scoping review was to synthesize the qualitative evidence of the level of resilience among partner caregivers of persons with ADRD. Method: A scoping review was conducted, which resulted in 19 research studies meeting inclusion criteria. Results: Findings were grouped by significant aspects of resilience as reflected in the studies reviewed, including risk and protective factors, partner caregivers' characteristics, and challenges and facilitators of resilience. Knowledge, skills, and access to social, psychological, and emotional support are needed to foster partner caregiver resilience. Conclusion: Further resilience research is necessary to inform development of public policies, programs, and interventions tailored to the unique needs of ADRD partner caregivers. [Research in Gerontological Nursing, 17(2), 99–108.] [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]

Aims and Objectives To clarify the concept of 'expressed emotion' and its application to caregivers of older adults with dementia. Background Expressed emotion has been a useful construct for understanding the quality of family relationships affecting patients with mental illness and their caregivers. However, this concept has been developed without precisely defining 'expressed emotion' as it pertains to dementia patients. Clarity regarding expressed emotion will enable nurses to apply knowledge of expressed emotion and provide important information for the development of new clinical interventions for this specific population. Design Integrative review. Methods A review of literature on expressed emotion by caregivers of older adults with dementia. The inclusion criteria were: (1) published in English or Chinese during 1970-2012; (2) included both research and theoretical review articles on expressed emotion in nursing and other disciplines such as psychology, psychiatry and sociology. Initially, 236 articles were screened, and finally, 32 articles were evaluated for this review. Results Emotional expression and expressed emotion were discussed to clarify the distinctions and address overlap between these two similar terms. In addition, expressed emotion was examined further from three different aspects: trait or state, social control and cross-cultural. Finally, the results of reviewed papers for expressed emotion on dementia patients were explored and synthesised. Conclusion A conceptual definition and a theoretical framework for the concept of expressed emotion are urgently needed to further our understanding of this critical phenomenon. With increasing attention to caregiving for patients with dementia, including the concept of expressed emotion in the research of this field may accelerate understanding of the importance of the family dynamics in advanced ageing caregiving. Relevance to clinical practice The expressed emotion concept could guide much of current clinical practice and help professional nurses understand the family's experience and perspective on mental illness, especially regarding dementia within the family. [ABSTRACT FROM AUTHOR]

Aim: To explore the factors that affect the quality of interactions between nursing personnel and the informal caregivers of people with memory disorders. Design: Systematic review and metasummary of qualitative empirical research. Methods: The literature search targeted studies concerning the professional care interactions between nursing personnel and the informal caregivers of people with progressive memory disorders. The search in PubMed, CINAHL, PsycINFO and Scopus covered records from the earliest possible date up to December 2020. The data were summarised using a qualitative metasummary method. Preferred Reporting Items for Systematic reviews and Meta‐Analyses (PRISMA) checklist was used to validate the reporting process. Results: Ten articles were included. As presented in 33 statements, the factors affecting the quality of interactions were related to (1) expectations, (2) memory disorders, (3) interaction strategies, (4) time and place of interactions and (5) organisational aspects. Meeting the individual interactional needs of informal caregivers is recommended. The results provide guidance for improving the quality of interactions between nursing personnel and informal caregivers. [ABSTRACT FROM AUTHOR]

More tasks and responsibilities have been transferred to the caregivers of a seriously ill person living at home. The caregivers risk getting overburdened and sick themselves and therefore cannot help with sufficient support. Limited knowledge exists about what applies in a private home, and there is a general lack of knowledge about how healthcare professionals can support the caregivers. In this review, we investigated how nurses can support caregivers where a seriously ill person is living at home. The design was a scoping review. Literature published from 2007 to 2022 was searched in four databases: PubMed, CINAHL, Embase, and PsycINFO. Quality assessment was made by Hawkers model, and n = 18 studies from Northern Europe, the USA, and Canada were included. The methods used were 11 qualitative, 5 quantitative, and 2 mixed-method studies, including 971 caregivers, 217 patients, and 10 healthcare professionals. Multidisease, cancer, apoplexy, and recipients of palliative care were the main focus, but other diseases were also represented. The nurse's task is to ensure the presence of a number of prerequisites for the care process to be successful and to be aware that caregivers may find themselves in a number of dilemmas and to try to remedy these dilemmas. If possible, the nurse should facilitate that the care burden is shared between several members of the family. Care must be performed according to the principles of family nursing, meaning that all relevant members of the family, appointed by the patient, are included, and collaboration is established. Future research and practice should focus on the nurses, the framework home care nurses work under, and how they can practice family nursing, so that family nursing becomes a natural part of primary care. [ABSTRACT FROM AUTHOR]

We aimed to review and synthesise the evidence of the interventions of patients' and informal caregivers' engagement in managing chronic wounds at home. The research team used a systematic review methodology based on an updated guideline for reporting systematic reviews (PRISMA) and recommendations from the Synthesis Without Meta‐analysis. Cochrane Central Register of Controlled Trial of the Cochrane Library, Pubmed, Embase, CINAHL, Wanfang (Chinese), and CNKI database (Chinese) were searched from inception to May 2022. The following MESH terms were used: wound healing, pressure ulcer, leg ulcer, diabetic foot, skin ulcer, surgical wound, educational, patient education, counselling, self‐care, self‐management, social support, and family caregiver. Experimental studies involving participants with chronic wounds (not at risk of wounds) and their informal caregivers were screened. Data were extracted and the narrative was synthesised from the findings of included studies. By screening the above databases, 790 studies were retrieved, and 16 met the inclusion and exclusion criteria. Studies were 6 RCTs and ten non‐RCTs. Outcomes of chronic wound management included patient indicators, wound indicators, and family/caregiver indicators. Home‐based interventions of patients or informal caregivers' engagement in managing chronic wounds at home may effectively improve patient outcomes and change wound care behaviour. What's more, educational/behavioural interventions were the primary type of intervention. Multiform integration of education and skills training on wound care and aetiology‐based treatment was delivered to patients and caregivers. Besides, there are no studies entirely targeting elderly patients. Home‐based chronic wound care training was important to patients with chronic wounds and their family caregivers, which may advance wound management outcomes. However, the findings of this systematic review were based on relatively small studies. We need more exploration of self and family‐oriented interventions in the future, especially for older people affected by chronic wounds. [ABSTRACT FROM AUTHOR]

(1) Background: Suicide is a leading cause of death among young people. Preventing suicide in young people is a priority. Caregivers play a vital role in ensuring interventions for young people experiencing suicide ideation and/or attempts are implemented, and that they are maintained over time. Despite this, little is known about what caregivers find helpful and challenging in relation to suicide prevention interventions. This rapid scoping review is the first to address this gap. (2) Methods: Searches were completed on six electronic databases using keywords relating to 'suicide prevention, 'young people', and 'caregivers'. Ten studies—using both qualitative and quantitative methods, and involving >1400 carers from the United States and Europe—were selected for inclusion. (3) Results: The review shows that caregivers value interventions that are delivered by non-judgmental clinicians, that are suitable to the particular needs of their child, that are available when needed, and that support their confidence and communication. Caregivers experience difficulties with interventions that require their attendance at specific times, and that fail to recognize and/or address their own mental health needs. (4) Conclusions: The findings can be used to inform and improve the intervention design, with the aim of improving outcomes for caregivers and young people. [ABSTRACT FROM AUTHOR]

Background: There is a global need for interventions that support the wellbeing of people living with dementia and their family care partners. Studies show that shared musical activities may achieve this. Our systematic review aimed to synthesise existing research exploring dyads' experiences of shared musical activities across a range of contexts. Method: From 31 October 2020 we searched PubMed, PsycInfo, CINAHL Complete, EMBASE, RILM, Web of Science Core Collection, Google Scholar and ProQuest Dissertations & Theses for studies published up to 14 April 2021, and hand searched five music therapy journals plus citation lists. Thirteen qualitative studies reporting on dyads' experiences and perspectives of shared musical activities across a range of settings were included. Studies with mixed populations or mixed modality interventions were excluded. We analysed the final studies using thematic synthesis, engaging in reflective discussions and reflexivity throughout. The quality of included studies was assessed using the CASP qualitative checklist. This study is registered on PROSPERO: CRD42020169360. Results: Six themes were identified from 13 studies: 1) shared musical activities support wellbeing for people living with dementia, 2) music groups become ecological systems, 3) shared musical activities are experienced differently over time, 4) shared musical activities are experienced by me and as we, 5) music is a supportive structure, and 6) the thread of connection (an overarching theme). A GRADE-CERQual assessment found moderate to high confidence in these findings. Findings informed the development of the Contextual Connection Model of Health Musicking. Conclusion: Shared musical activities foster experiences of connection for people living with dementia and their family care partners. Experiences of connection are supported through professional facilitation and the structural aspects of music, and are influenced by the setting and changes over time. These experiences of connection play a central role in supporting dyadic and individual wellbeing. These findings are largely relevant to a western cultural context; future research should seek to include more diverse cultural experiences. [ABSTRACT FROM AUTHOR]

AIM: This study was conducted with the aim of assessing the needs and determining the care dimensions of the essential palliative care service package for the elderly with Alzheimer's disease. METHOD: The mixed exploratory study was conducted in three phases. The first phase of the study was conducted in the form of a qualitative study and a literature review. This qualitative research was done through in-depth and semi-structured interviews with 19 qualified caregivers (11 informal caregivers and 8 formal caregivers) The samples were selected using the purposive sampling method by referring to hospitals, nursing homes, and active branches of the Alzheimer's Association in some provinces. In the second phase, the dimensions of palliative care were codified, and in the third phase, the prioritization and the validation of the dimensions of palliative care were performed in the form of two Delphi rounds. RESULTS: Based on the results of the first phase of the study, the care dimensions of the service package were placed in eight categories based on National Consensus Project. In the second phase, the needs of Alzheimer's patients were arranged in the form of a questionnaire consisting of 8 parts, with 180 indicators. Then, in the third phase, the dimensions of the palliative care essential package were designed with 74 items in the form of 4 dimensions. CONCLUSION: The dimensions of the essential service package of palliative care included a series of interventions as well as physical, psychological, cognitive, and spiritual support. [ABSTRACT FROM AUTHOR]

Background: The efficacy of mindfulness‐based interventions (MBIs) for stress and psychological distress in professional caregivers supporting individuals with intellectual or developmental disabilities (IDDs) is reviewed. Methods: Eight studies met inclusion criteria and were systematically reviewed, including RCTs and single‐group designs. Results: As per Reichow, Volkmar, and Cicchetti (Journal of Autism and Developmental Disorders, 38, 2008), three studies were classified as “adequate quality” and five were classified as “weak.” There were inconsistent findings in relation to stress, with significant reductions or increases reported by caregivers following MBIs. MBIs consistently improved caregivers’ ratings of distress. Process outcomes suggested increased mindful awareness, increased cognitive defusion and reduced thought suppression. Treatment effects were maintained or continued to grow at follow‐up. Conclusions: Caregivers of individuals with IDDs face multiple challenges on a daily basis. This review supports, at least, short‐term benefits for MBIs in the management of stress and distress in caregivers of individuals with IDDs. [ABSTRACT FROM AUTHOR]

Background: Nursing staff is ideally positioned to play a central role in end-of-life communication as part of advance care planning for older people. However, this requires specific skills and competences. Only fragmented knowledge is available concerning important fundamentals in end-of-life communication performed by nursing staff. Objective: This review aimed to explore the fundamentals of end-of-life communication as part of advance care planning in the hospital, nursing home and home care setting, from the perspective of the nursing staff, the older person, and the family caregiver. Design: Scoping review. Methods: A literature search in PubMed, PsycINFO, CINAHL and Google (Scholar) was conducted on August 20, 2022. The search strategy followed the sequential steps as described in the Joanna Briggs Institute Manual. Peer-reviewed articles of empirical research and gray literature written in English or Dutch and published from 2010 containing fundamentals of end-of-life communication as part of advance care planning from the perspective of nursing staff, older people, and family caregivers in the hospital nursing home or home care setting were considered eligible for review. Results: Nine studies were included, and four themes were composed, reflecting 11 categories. Nursing staff attunes end-of-life communication to the values and needs of older people to approach the process in a person-centered manner. This approach requires additional fundamentals: building a relationship, assessing readiness, timing and methods to start the conversation, communication based on information needs, attention to family relationships, a professional attitude, improving communication skills, listening and non-verbal observation skills, and verbal communication skills. Conclusions: This review is the first to compile an overview of the fundamentals of end-of-life communication performed by nursing staff. Building a nursing staff-older-person relationship is the most important foundation for engaging in a person-centered end-of-life communication process. Knowing each other enables nursing staff to have a sense of older people's readiness, determine the right timing to initiate an end-of-life conversation, identify specific needs, and accurately apply (non-)verbal observation skills. end-of-life communication is not a one-time conversation, but a complex process that takes time, effort, and genuine interest in each other. [ABSTRACT FROM AUTHOR]

Women are disproportionately affected by dementia, both in terms of developing dementia and becoming caregivers. We conducted an integrative review of English language literature focusing on the issues affecting women in relation to dementia from an international perspective. The majority of relevant studies were conducted in high-income countries, and none were from low-income countries. The effects of caregiving on health, well-being, and finances are greater for women; issues facing women, particularly in low- and middle-income countries, need to be better understood. Research should focus on building resilience to help people adjust and cope long term. [ABSTRACT FROM AUTHOR]

This systematic review explores gender differences in adverse psychosocial and role-related outcomes of family caregivers of older adults with chronic illnesses. Data sources for the systematic review included CINAHL, PubMed, PsycINFO, and Google Scholar. Eligible primary research focused on examining gender-based differences in psychological and emotional outcomes (e.g., burden, depression, stress) among family caregivers of an older adult with chronic illness. In total, 16 studies were included in the review with most studies using a cross-sectional design and conducted outside of the United States. Studies reported on gender differences in health outcomes such as burden, stress, and anxiety. Women caregivers had overall higher negative outcomes, but men may have more intense difficulty during the initial caregiver transition phase. Resources to address caregiver health should consider the caregiver's gender. As the older adult population grows, more caregiver research is needed and future studies to include more male caregivers. [ABSTRACT FROM AUTHOR]

For people with autism spectrum disorder (ASD), the risk of mental illness, including suicidality, has a higher prevalence than the general population. This scoping review explored how people with ASD access suicide hotlines/crisis support services; and current approaches to delivering mental health services (MHS) to people with ASD. A search identified 28 studies meeting the selection criteria with analysis revealing four key findings. The support received by the person with ASD influenced how they accessed MHS; people often encounter barriers to accessing MHS; a separation exists between autism and MHS; and no studies on accessing or delivering MHS through crisis hotlines. The presence of such autism-specific crisis hotlines and the dearth of studies suggest a void in the existing research. [ABSTRACT FROM AUTHOR]

Specialist nurses are one way of providing support for family carers of people with dementia, but relatively little is known about what these roles achieve, or if they are more effective than roles that do not require a clinical qualification. The aim of this review was to synthesise the literature on the scope and effectiveness of specialist nurses, known as Admiral Nurses, and set this evidence in the context of other communitybased initiatives to support family carers of people with dementia. We undertook a systematic review of the literature relating to the scope and effectiveness of Admiral Nurses and a review of reviews of interventions to support the family carers of people with dementia. To identify studies, we searched electronic databases, undertook lateral searches and contacted experts. Searches were undertaken in November 2012. Results are reported narratively with key themes relating to Admiral Nurses identified using thematic synthesis. We included 33 items relating to Admiral Nurses (10 classified as research) and 11 reviews evaluating community-based support for carers of people with dementia. There has been little work to evaluate specific interventions provided by Admiral Nurses, but three overarching thematic categories were identified: (i) relational support, (ii) co-ordinating and personalising support and (iii) challenges and threats to the provision of services by Admiral Nurses. There was an absence of clearly articulated goals and service delivery was subject to needs of the host organisation and the local area. The reviews of community-based support for carers of people with dementia included 155 studies but, in general, evidence that interventions reduced caregiver depression or burden was weak, although psychosocial and educational interventions may reduce depression in carers. Community support for carers of people with dementia, such as that provided by Admiral Nurses, is valued by family carers, but the impact of such initiatives is not clearly established. [ABSTRACT FROM AUTHOR]

Unpaid family caregivers play a critical role in the care of older adults with visual impairments. Caring for older adults with visual impairments requires much time and energy, often resulting in psychological stress and reduced quality of life for the unpaid caregiver. However, there is a paucity of data on the impact of caregiving on quality of life and related outcomes among these caregivers. The purpose of this study was to conduct a scoping review examining issues of quality of life, health, stress, burden, and barriers among unpaid caregivers of older adults with visual impairments. The study also aimed to summarize interventions for addressing these issues. This study followed the Arksey and O'Malley five-stage approach for scoping reviews. We performed a search of published peer-reviewed articles available in PubMed, CINAHL Complete, and PsycINFO to identify relevant studies. Two reviewers conducted the screening of titles, abstracts, and full-texts. A total of 24 articles were eligible for full-text screening from the 452 records identified, and 5 articles met the final inclusion criteria. The following four themes were identified: (1) prevalence of quality of life–related barriers among unpaid caregivers of older adults with visual impairments; (2) adverse events among unpaid caregivers of older adults with visual impairments; (3) interventions for unpaid caregivers of older adults with visual impairments; and (4) potential impacts of intervention on unpaid caregivers of older adults with visual impairments. These findings point to a lack of interventions for unpaid caregivers of older adults with visual impairments, despite the prevalence of quality of life–related barriers and adverse events in this population. This study aligns with the social model of disability as it relates to the failure of the system to meet the needs of older adults with visual impairments. Research addressing these issues is urgently needed. [ABSTRACT FROM AUTHOR]

In this systematic review, effects of telemental health (TMH) practices' on caregivers of children/adolescents with mental illnesses were investigated. The literature review included databases, and reference lists of published studies. All studies published until September 2021 were reviewed. Eleven studies were included. Several services were provided via TMH: education, cognitive behavioral therapy (CBT), parent training, caregiver behavior training, family CBT. The effectiveness of TMH interventions on caregivers varied from low to high. Most reproducible findings were on caregivers' satisfaction, stress, therapeutic alliance and caregiver burden. Studies had a low to high bias risk. Most studies had small samples. Results built on the small but growing literature support TMH interventions' promising role in caregivers of children with mental illness. Future studies should estimate outcomes with medium to low effect size. Other caregiver groups, rarely considered in previous studies, should be included. Bias risk should be minimized. Larger, more methodologically rigorous studies should be conducted. [ABSTRACT FROM AUTHOR]

The majority of people living with dementia are cared for by their families. Family carers play a vital role in upholding the formal care system. Caring for a family member with dementia can be fulfilling. However, this role can have a considerable negative impact on family carers' mental and physical health and quality of life. Several empirical research studies have recently been conducted that explore the potential benefits of music interventions for family carers of people living with dementia. Singing has been the primary musical medium employed. This article presents the first review of this literature to date. It investigates the impact of music interventions on the health and well-being of family carers of people living with dementia, and how they experience and perceive these interventions. Whittemore and Knafl's five-stage integrative review framework was utilized: (i) problem identification; (ii) literature search; (iii) data evaluation; (iv) data analysis and synthesis; and (v) presentation of the findings. A total of 33 studies met the inclusion criteria. Analysis and synthesis resulted in three overarching themes: impact on family carers, carer perceptions of music interventions and null quantitative findings in small studies. The review found that singing and music interventions may improve family carers' social and emotional well-being, enhance their ability to cope and care and ameliorate the caring relationship, contributing to experiences of flourishing. However, it highlighted that this area is under-researched and pointed to the need for larger, more rigorous studies. [ABSTRACT FROM AUTHOR]

The U.S. population of older adults living with dementia is projected to double by 2060. They rely on over 16 million family and unpaid caregivers to provide for their increasingly complex needs and care transitions. Caregivers frequently feel underprepared and without adequate support or access to resources. This systematic review seeks to identify the needs of family and unpaid caregivers of older adults living with dementia across various care settings in the U.S. A systematic search was conducted to identify articles pertaining to the needs of caregivers of older adults living with dementia. The data extraction tool was developed using aspects from the Care Transitions Framework and the Family Caregiver Alliance. Data were organized based on 3 domains of caregiver needs and the care setting(s) of the older adults living with dementia and their caregivers. A total of 31 articles were eligible for inclusion. The majority met the MMAT screening criteria, but more than half only met 2 or less of the 5 quality criteria. Caregivers' needs were identified in the care settings of home/community-residing, assisted living, long-term care, skilled nursing, and memory care. Most articles either did not specify a care setting or included more than 1 and did not report the findings separately. Caregivers in each care setting, except memory care, identified needs in all 3 of the following domains: (1) social support—formal and informal, (2) confidence, competence, and strengths in the caregiving role, and (3) values and preferences. [ABSTRACT FROM AUTHOR]

Background and aims: Parkinson's disease patients (PwPD) rely heavily on their family caregivers. However, there remains uncertainty regarding the subjective experience of the family caregivers of PwPD. This study aims to provide an in-depth summary of the current knowledge about the subjective experiences of family caregivers caring for PwPD, to understand the factors that influence this experience and to provide the evidence for healthcare services. Methods: We conducted a systematic review and meta-ethnography using Noblit and Hare's approach. The search strategy used MeSH terms in combination with free-text searching of 10 databases (from their inception until July 2021). Titles and abstracts were reviewed by two reviewers and, for the studies that met the eligibility criteria, full-text articles were obtained. The Critical Appraisal Skills Program (CASP) checklist was employed to assess the quality of studies. Results: A total of 3318 studies were screened and 29 qualitative studies were included in this review. These studies recorded the experience of 399 participants across 12 countries, most were females. Five themes emerged: (a) feelings related to PD; (b) challenges to family life; (c) external challenges; (d) adjustment and adaptation; (e) external support. We propose a new conceptual model that highlights that the experiences of caregivers for PwPD are dynamic and influenced by a variety of internal and external factors. Conclusion: Our findings illustrate the complex and dynamic experiences of family caregivers for PwPD. It is necessary to explore how the influencing factors can be modified to improve the lived experience of family caregivers. [ABSTRACT FROM AUTHOR]

Aims: To appraise the empirical literature on the needs of Indigenous informal caregivers caring for people living with dementia in Indigenous communities. Design: Whittemore and Knafl's updated approach to integrative reviews, PRISMA guidelines, and CASP checklists for narrative analysis were followed. Data sources: A systematic search of published empirical literature from January 2010 to August 2020 was undertaken in six databases. Review methods: Fifty‐one studies met the research question and the inclusion criteria. Results: Five themes describe the findings: Decolonizing Western perspectives on dementia, the centrality of cultural safety, caregivers' experiences, pre‐dementia community education and family and community‐centred care emerged from the thematic analysis. Most of the studies used quantitative methodologies, and few studies were conducted using community‐based approaches. Conclusion: This review shows that Indigenous caregiving represents an emerging field in nursing and health sciences in a context of a global crisis. Researchers need to focus on Indigenous values and voices to adapt care and support informal caregivers. Our review emphasizes that working with Indigenous communities will likely translate into new care delivery models, policies and practices to support Indigenous informal caregivers and address the specific social determinants impacting caregivers' roles and tasks. Impact: This review highlights the necessity of having community and family‐based discussions on enhancing the delivery of dementia care for Indigenous peoples in Canada and worldwide. Decolonizing Western perspectives of dementia translate into culturally safe approaches that aim to integrate Indigenous cultural perspectives of holism, reciprocity, wisdom, respect of older people and relationality into nursing practice. The support of Indigenous informal caregivers requires future studies to address the stigmatizing Western views of dementia. [ABSTRACT FROM AUTHOR]

Background: Most people with dementia transition into nursing homes as their disease progresses. Their family caregivers often continue to be involved in their relative's care and experience high level of strain at the end of life. Aim: To gather and synthesize information on interventions to support family caregivers of people with advanced dementia at the end of life in nursing homes and provide a set of recommendations for practice. Design: Mixed-Methods Systematic Review (PROSPERO no. CRD42020217854) with convergent integrated approach. Data sources: Five electronic databases were searched from inception in November 2020. Published qualitative, quantitative, and mixed-method studies of interventions to support family caregivers of people with advanced dementia at the end of life in nursing home were included. No language or temporal limits were applied. Results: In all, 11 studies met the inclusion criteria. Data synthesis resulted in three integrated findings: (i) healthcare professionals should engage family caregivers in ongoing dialog and provide adequate time and space for sensitive discussions; (ii) end-of-life discussions should be face-to-face and supported by written information whose timing of supply may vary according to family caregivers' preferences and the organizational policies and cultural context; and (iii) family caregivers should be provided structured psychoeducational programs tailored to their specific needs and/or regular family meetings about dementia care at the end of life. Conclusion: The findings provide useful information on which interventions may benefit family caregivers of people with advanced dementia at the end of life and where, when, and how they should be provided. [ABSTRACT FROM AUTHOR]