Search

Objective: nformal caregivers provide substantial support for people living with cancer. Previous systematic reviews report on the efficacy of cancer caregiver interventions but not their potential to be implemented. The aim of this systematic review was to explore the potential for cancer caregiver interventions to be implemented into practice.Methods: We searched three electronic databases to identify cancer caregiver interventions on 5 January 2018. We operationalised six implementation outcomes (acceptability, adoption, appropriateness, feasibility, fidelity, and costs) into a tool to guide data extraction.Results: The search yielded 33 papers (27 papers from electronic databases and six papers from other sources) reporting on 26 studies that met review criteria. Fewer than half the studies (46%) contained evidence about the acceptability of interventions from caregivers' perspectives; only two studies (8%) included interventions developed with input from caregivers. Two studies (8%) addressed potential adoption of interventions, and no studies discussed intentions, agreement, or action to implement interventions into practice. All studies reported on intervention appropriateness by providing a rationale for the interventions. For feasibility, on average less than one-third of caregivers who were eligible to be involved consented to participate. On fidelity, whether interventions were conducted as intended was reported in 62% of studies. Cost data were reported in terms of intervention delivery, requiring a median time commitment of staff of 180 minutes to be delivered.Conclusions: Caregiver intervention studies lack components of study design and reporting that could bridge the gap between research and practice. There is enormous potential for improvements in cancer caregiver intervention study design to plan for future implementation. [ABSTRACT FROM AUTHOR]

Introduction Methods Results Conclusion PLAIN LANGUAGE SUMMARY In childhood intervention, parent–therapist collaboration is central to the family‐centred approach. Despite long‐standing discussion in occupational therapy literature, the field faces challenges, including inconsistent terminology and difficulties in translating theory into practice. This paper represents the first part of a comprehensive scoping review study aimed at developing foundational concepts for collaborative practices with parents in occupational therapy for children. Therefore, this paper focusses on mapping existing practices, types, and approaches articulated in the literature.We searched English‐language sources published worldwide from 1998 to 2022 discussing collaborative practices with parents in occupational therapy for children aged 0–10 with any diagnosis, including multidisciplinary practices. Seven databases were searched. Data from peer‐reviewed indexed literature, theses and dissertations, and book chapters were extracted and analysed through basic numerical and descriptive analyses before being synthesised into similar categories. The Joanna Briggs Institute Manual and the Preferred Reporting Items for Systematic reviews and Meta‐Analysis—extension for Scoping Reviews were used.The scoping review yielded 299 papers. Parent–therapist collaboration was prominent in clinics, family homes, schools, and hospitals, particularly during therapy implementation, goal setting, and planning. Most reported practice types included ‘interventions with parent engagement’, ‘parent‐directed interventions’, and ‘parent education’. ‘Family‐centred’, ‘occupational‐focussed’, and ‘client–therapist collaborative’ approaches were frequently mentioned. There were inconsistencies in the terms used to describe collaborative practice characteristics.Over the past 24 years, the collaborative practice literature has expanded and evolved, with parent–therapist collaboration observed across various occupational therapy settings. Inconsistencies in this collaboration across different therapeutic stages were revealed, which could impact intervention success and sustainability. Further research is needed to explore parent–therapist collaboration mechanisms within and across stages. This scoping review also underscores the need for a common framework to guide practice and research.This literature review explores how occupational therapists and parents work together in childhood intervention. Collaboration is essential for understanding and meeting children's needs within their family and community settings. However, occupational therapists and parents face challenges in applying family‐centred practices and using a common language to bridge theory with practice. To address these challenges, we examined 299 papers published between 1998 and 2022 to understand how collaborative practices with parents have been described in the literature. Our review revealed that therapists and parents collaborate across various settings, such as clinics, schools, homes, and hospitals, mainly during therapy sessions, goal setting, and planning interventions. Collaborative practices take different forms. For instance, therapists often encourage parents to actively engage and take the lead in therapy, requiring therapists to recognise and respect parents' priorities and learning preferences. They often develop strategies together to support the child within family routines. While we found several studies on therapist–parent collaboration, the review outlined inconsistencies in how this practice was described and applied, which could affect its success. Therefore, more research is needed to understand the best ways in which collaboration can occur at each stage of therapy. The need for a core guideline for collaborative practice with parents in occupational therapy was also observed. While therapist–parent collaboration is used in occupational therapy for children, there is a clear need to minimise inconsistencies and gaps found in the literature, as well as to ensure a common language to promote intervention quality and success. [ABSTRACT FROM AUTHOR]

Objectives: To explore the experiences of caregivers of terminally ill patients with delirium, to determine the potential role of caregivers in the management of delirium at the end of life, to identify the support required to improve caregiver experience and to help the caregiver support the patient.Methods: Four electronic databases were searched-PsychInfo, Medline, Cinahl and Scopus from January 2000 to July 2015 using the terms 'delirium', 'terminal restlessness' or 'agitated restlessness' combined with 'carer' or 'caregiver' or 'family' or 'families'. Thirty-three papers met the inclusion criteria and remained in the final review.Results: Papers focused on (i) caregiver experience-distress, deteriorating relationships, balancing the need to relieve suffering with desire to communicate and helplessness versus control; (ii) the caregiver role-detection and prevention of delirium, symptom monitoring and acting as a patient advocate; and (iii) caregiver support-information needs, advice on how to respond to the patient, interventions to improve caregiver outcomes and interventions delivered by caregivers to improve patient outcomes.Conclusion: High levels of distress are experienced by caregivers of patients with delirium. Distress is heightened because of the potential irreversibility of delirium in palliative care settings and uncertainty around whether the caregiver-patient relationship can be re-established before death. Caregivers can contribute to the management of patient delirium. Additional intervention studies with informational, emotional and behavioural components are required to improve support for caregivers and to help the caregiver support the patient. Reducing caregiver distress should be a goal of any future intervention.© 2016 The Authors. Psycho-Oncology Published by John Wiley & Sons Ltd. [ABSTRACT FROM AUTHOR]

Background: COVID‐19 necessitated emergency telepractice for student‐led speech‐language therapy clinical practicals in training institutions, with limited preparation and evidence‐based guidelines. Beyond the pandemic, practitioners and university training sites are likely to continue to offer telepractice necessitating thorough preparation for telepractice services underpinned by a comprehensive understanding of the complexities involved in online therapy. Aims: Adopting realist evaluation principles, our aim in this paper was to explore broadly what works and does not work in a set of student‐led telepractice sessions in a diverse, resource‐limited context. The broader goal of this project was to provide evidence‐based support to enhance the efficiency and success of telepractice sessions in student clinical training contexts. Methods & Procedures: We used qualitative observational methods with reflexive thematic analysis to analyse 28 video recordings and 61 observation notes of student‐led paediatric telepractice sessions from a South African university clinic as part of a pilot study. Outcomes & Results: We identified four overarching considerations for student‐led telepractice: (1) additional, specific preparation is required, (2) with greater management of technology and adaptation of tasks, especially during times of poor connectivity; (3) telepractice relies heavily on caregiver input and collaboration; and (4) promoting engagement online, holding a client's attention, building rapport and offering reinforcement are critical skills that are complicated by the lack of face‐to‐face contact. Conclusions & Implications: Our findings indicate that telepractice pedagogy needs to be explicitly taught and students require practical assistance as they learn how to use this service delivery approach effectively. There are some aspects peculiar to telepractice that require unique consideration and planning, especially in contexts where service providers and users may be unfamiliar with this form of service provision. The findings of this pilot study can be used by clinical educators and student clinicians to enhance clinical training opportunities involving telepractice. WHAT THIS PAPER ADDS: What is already known on this subject: Many speech‐language therapy (SLT) student clinicians had to transition quickly to telepractice service provision during COVID‐19 with limited existing guidelines and support, especially in contexts where teletherapy is typically non‐existent or difficult to access. Although there is some literature available on experiences of telepractice, there is very little evidence‐based research which explores the mechanics of such sessions in real‐time and which offers practical support to student clinicians and clinical educators engaging in this mode of service delivery. What this study adds: This pilot study examined video‐recorded, student‐led, paediatric, speech‐language teletherapy sessions to understand challenges and considerations involved in using telepractice as a clinical training tool. Findings show that additional preparation for telepractice sessions is required, particularly in contexts of poor digital literacy; students must learn to manage technology, especially when connectivity poses a challenge, and adapt therapy tasks for online work with clients; telepractice relies heavily on caregiver input and collaboration, more so than in in‐person consultations, and this relationship requires careful management; and promoting engagement online, holding a client's attention, building rapport and offering reinforcement are critical yet challenging skills in telepractice. What are the potential or actual clinical implications of this work?: Our findings highlight a need to teach telepractice pedagogy explicitly and support students practically in learning how to provide therapy effectively via this mode of service delivery. Observational methods for studying practices in recorded telepractice sessions can be used as part of a reflective approach to clinical training. Using already available data allowed us to unpack the 'messy reality' of clinical training using telepractice. [ABSTRACT FROM AUTHOR]

Since the end of the Second World War in 1945, the erection of camps within and across state borders has become the most common response to the influx of displaced persons. Based on empirical evidence from northern Uganda, this paper aims to provide answers to two main questions: (i) how does the camp influence and frame the upbringing of children?; and (ii) how do caregivers shape and adjust upbringing within this setting and when they return to their 'former homes' ? Interviews and focus‐group discussions were conducted with 48 caregivers living in Kitgum District, northern Uganda. Deductive thematic analysis was employed to structure participants' accounts of past and present interconnections between upbringing and (previous) encampment. By paying close attention to their (counter‐)narratives, people's agency and coping are emphasised through the simultaneous forging of new interconnections (that is, discontinuities) and holding on to old interconnections (that is, continuities) between upbringing, the camp, and the post‐war village. [ABSTRACT FROM AUTHOR]

Aims: The aim of this systematic review is to compare the effectiveness of a powered (PTB) and a manual (MTB) toothbrush in the hands of people with physical (PD) or intellectual (ID) disabilities or in the hands of a caregiver on parameters of plaque and gingival inflammation. Methods: MEDLINE‐PubMed, Cochrane‐CENTRAL and EMBASE databases were searched from initiation up to February 2022. The inclusion criteria were clinical trials conducted in people with PDs or IDs and comparing the effect of toothbrushing with a PTB to an MTB on plaque removal and gingival health. Data were extracted from the eligible studies and analyzed in four subgroups based firstly on the person performing the toothbrushing, either the participants or a caregiver, not a dental professional, and secondly on the main disability of the participants, either PD or ID. Heterogeneity and risk of bias were assessed, data were extracted from the eligible studies, and a descriptive analysis was performed. Results: The search yielded 294 unique papers; after selection 16 eligible publications describing 25 comparisons were included: 12 self‐brushing and 13 caregiver‐brushing comparisons. Considerable clinical and methodological heterogeneity was present; together with limited numerical data, not allowing for a meta‐analysis. The descriptive analysis showed, in the majority, no statistically significant difference between PTB and MTB. This applied to self‐brushing and caregiver‐brushing in both disability groups. Conclusion: This review demonstrates with a low level of evidence that a PTB compared to an MTB in the hands of people with PD or ID or in the hands of their caregivers results in no clinical difference in effectiveness on parameters of plaque and gingival inflammation. [ABSTRACT FROM AUTHOR]

Introduction Methods Results Conclusion In occupational therapy for children, collaborative practice with parents is crucial for meaningful family‐centred interventions, yet it remains undefined and inconsistently addressed. This study aimed to establish foundational concepts for collaborative practice with parents in occupational therapy for children in progressing the field with a universal description.This paper encompasses the second dataset of a larger scoping review and a preliminary validation of findings by an advisory panel. Data were gathered from indexed sources on collaborative practice with parents in occupational therapy for children (ages 0–10) using MedLine, PsychInfo, ERIC, Embase, OTSeeker, Scopus, and ProQuest Central. Data were extracted, charted, and descriptively analysed by paired independent reviewers. The Joanna Briggs Institute Manual and the Preferred Reporting Items for Systematic Reviews and Meta‐Analysis—extension for Scoping Reviews were used. A draft definition of collaborative practices, developed based on preliminary review findings and an operational definition, was validated by an advisory panel of 13 experienced Australian occupational therapists, whose input was integrated into a final, comprehensive description of collaborative practice.The scoping review encompassed 299 sources, revealing three major components of collaborative practice: ‘collaborative practice aims’, ‘parent–therapist partnership’, and ‘strategies for collaboration’. The advisory panel endorsed the draft definition, confirmed its professional relevance, and suggested some modifications.The major outcome of this study is an evidence‐based and discipline‐specific preliminary description of collaborative practice with parents in occupational therapy for children. This description provides a common language and foundational concepts for the future development of a collaborative practice framework to guide practice and research. Future studies can explore specific components, exploring their mechanisms and significance. Further expanded validation is required, incorporating the perspectives of a wider community of occupational therapists and families to enhance the description's applicability. [ABSTRACT FROM AUTHOR]

Background: Person‐centred services are inherently related to patients/caregivers' needs. However, the extent to which dysphagia services within Singapore meet consumer needs is largely unknown. Involving patients/caregivers in service evaluation/redesign deepens the understanding of consumer needs. This process also increases the success of implementing service enhancements through relevant and meaningful change. Aim: This study aimed to identify aspects of dysphagia services, within acute and subacute settings in Singapore, perceived as highly important and easy to change by patients/caregivers. Methods & Procedures: Using concept mapping methodology, 5 patients and 11 caregivers reflected on their experiences of receiving dysphagia care and proposed 59 unique suggestions to improve dysphagia services within Singapore. Then, each individual sorted the suggestions into groups based on similarity and rated each statement for its perceived importance and changeability for service enhancement. Data were analysed using multidimensional scaling, hierarchical cluster analysis, and bivariate analysis to generate clusters of conceptually similar suggestions and a prioritised list of suggestions for service enhancement. Results: Twelve clusters were identified, with most rated as more important than changeable for service improvement. Participants prioritised 23 (39%) of the suggestions as highly important and easy to change, and these focused on ensuring effective communication among consumers and healthcare team, enhancing patients and carers' access to support at home, increasing patients and carers' access to educational resources, and improving service quality and access through technology. Conclusion: These findings provide future directions on how to develop and implement dysphagia services in Singapore to better meet the needs of patients/caregivers. WHAT THIS PAPER ADDS: What is already known on this subject: Little is known about patients and caregivers' experiences and expectations of receiving dysphagia services in Singapore. Consulting them in service review and improvement deepens understanding of their needs and increases the success of implementing meaningful service enhancements. What this study adds to existing knowledge: This study shows that patients and caregivers in Singapore identified a wide range of dysphagia service issues and prioritised a list of suggestions for service improvement. They prioritised four key areas for service optimisation: ensuring effective communication among consumers and healthcare team, enhancing patients and carers' access to support at home, increasing patients and carers' access to educational resources, and improving service quality and access through technology. What are the clinical implications of this work?: This research highlights the importance of considering the consumers' perspectives in service review and redesign. Patients and caregivers in Singapore identified four prioritised areas for service enhancements. These findings provide future directions on how to develop and implement dysphagia services in Singapore to better meet the needs of patients and caregivers. [ABSTRACT FROM AUTHOR]

With decades of pre‐clinical studies culminating in the recent clinical application of xenotransplantation, it would appear timely to provide recommendations for operationalizing oversight of xenotransplantation clinical trials. Ethical issues with clinical xenotransplantation have been described for decades, largely centering on animal welfare, the risks posed to the recipient, and public health risks posed by potential spread of xenozoonosis. Much less attention has been given to considerations relating to potentially elevated risks faced by those who may care for or otherwise have close contact with xenograft recipients. This paper examines the ethical and logistical issues raised by the potential exposure to xenozoonotic disease faced by close contacts of xenotransplant recipients—defined herein as including but not limited to caregivers, household contacts, and sexual partners—which warrants special attention given their increased risk of exposure to infection compared to the general public. We discuss implications of assent or consent by these close contacts to potentially undergo, along with the recipient, procedures for infection screening and possible quarantine. We then propose several options and recommendations for operationalizing oversight of xenotransplantation clinical trials that could account for and address close contacts' education on and agency regarding the risk of xenozoonosis. [ABSTRACT FROM AUTHOR]

Purpose: This paper presents an integrated literature review of the quality of life (QOL) in parents of individuals with Autism Spectrum Disorder (ASD). The rate of ASD is increasing. Parents of children with ASD have higher levels of stress and burden, which may lead to lower QOL. Design and Methods: A comprehensive, electronic search was performed to retrieve 15 relevant articles, including 5565 participants. An integrative review was performed to appraise and synthesize findings. Results: QOL was found to be lower in parents of children with ASD in physical, psychological, and social health and in spirituality, as compared with adults who were not parents of children with ASD. The strongest risk factor for parental QOL was the severity of the diagnosis of ASD. Protective factors for parental QOL were parent education level and levels of severity of ASD in the child. Practice Implications: Nurses can support families impacted by ASD, particularly severe ASD, through tailored resources to support early diagnosis and intervention, through the support of policies affecting low‐income families, and through increased awareness of severe ASD and its' impact on the child and the family. [ABSTRACT FROM AUTHOR]

Background: There is a wide agreement that family and friends of people with aphasia (PWA) can play a crucial role in the rehabilitation of interpersonal communication. Therefore, speech and language therapists (SLTs) should include family and friends in the process of therapy. However, little has been said about the role of caregivers of severely disabled PWA in the rehabilitation of communication functions. Aims: To examine how caregivers of severely disabled PWA perceive their relationship and communication with PWA, how they facilitate communication with PWA, and whether the caregiver's personality and emotional intelligence modify the abovementioned processes. Methods & Procedures: The study involved 123 caregivers of severely disabled stroke survivors with aphasia. Participants took part in a structured interview based on a structured interview guide created for the purpose of this study. The standardized psychological questionnaires NEO Five‐Factor Inventory (NEO‐FFI) and Schutte Emotional Intelligence Scale (SEIS) were used. Outcomes & Results: The caregiver's positive attitude towards the PWA correlated with the active facilitation of communication. The personality traits of caregivers and their level of emotional intelligence were associated with the tendency to use certain techniques to facilitate communication with PWA. Conclusions & Implications: Caregivers' positive attitude towards PWA is beneficial for the rehabilitation of communicative functions. Personality traits and emotional intelligence could modify the caregiver's strategy of coping with aphasia‐related challenges and should be taken into consideration when providing support. What this paper addsWhat is already known on the subjectInterpersonal communication must by definition involve at least two people. Therefore, there are a lot of approaches in SLT where support is given not only to the PWA but also to the communication partners. The most important group is significant others, which is usually understood as family members and friends. There is an increasing recognition that SLTs should include them in therapy.What this paper adds to existing knowledgeFor those PWA who need constant care, caregivers may have a significant influence on the quality of communication. Their positive attitude towards PWA corresponds with more active facilitation of communication and can make rehabilitation more efficacious. Caregivers should be educated on the cognitive and behavioural aspects of aphasia and encouraged to look actively for a PWA's positive characteristics. Caregivers' personality traits play a role in facilitating communication. For example, caregivers with high agreeableness are more likely to enjoy providing care, while those with higher conscientiousness declare using more techniques to facilitate communication with the PWA.What are the potential or actual clinical implications of this work?Caregivers' personality traits play a role in caring. Their positive attitude towards PWA corresponds to more active facilitation of communication, which can lead to more effective rehabilitation. This should be taken into account when training caregivers. Training programmes should include cognitive and behavioural aspects of aphasia as well as emphasize the need to maximize the PWA's abilities. [ABSTRACT FROM AUTHOR]

Aim: The aim of this review was to identify and synthesise literature reporting on support needs of older male caregivers, who are providing care for a chronically ill spouse/partner at home. Background: Traditionally, informal caregiving has been perceived as a feminised activity. Consequently, caregiving research has been dominated by female samples, and male caregivers are grossly under‐represented. Given the growing recognition of caregiving as a gendered concept, and the rise in number of male caregivers, particularly in later life, the need for better understanding of the needs of male caregivers is important in order to plan effective support for this population. Design: A systematic literature review. Methods: Four electronic databases and grey literature were systematically searched. Results: The systematic search resulted in 3,646 papers, eligibility criteria were applied to the full texts of 104 papers, and 11 papers met the inclusion criteria. Two core themes were identified: the need to maintain masculinity and the provision of social support. Conclusion: Findings suggest that men may have a gendered approach to caregiving based on dominant masculine norms. This can be manifested in a reluctance to ask for or accept help and a desire to retain control over caregiving. Findings also revealed isolation and loneliness experienced by older male caregivers, along with a preference for support to address this within a male‐specific context. It is suggested that healthcare professionals should be cognisant of the male caregiver approach and should have an increased awareness of male caregivers support preferences, and of their own gendered assumptions, in order to provide effective support for this population. Implications for practice: Nurses have a key role in providing family support. Findings from this review suggest that nurses should be aware of the specific needs of older male spousal caregivers if they are to provide effective care and support to this population group. [ABSTRACT FROM AUTHOR]

Objectives: Parkinson's disease (PD) is a progressive neurodegenerative disease that often impedes activities of daily living (ADL) and social functioning. Impairment in these areas can alter social roles by interfering with employment status, household management, friendships, and other relationships. Understanding how PD affects social functioning can help clinicians choose management strategies that mitigate these changes.Methods: We conducted a mixed-methods systematic review of existing literature on social roles and social functioning in PD. A tailored search strategy in five databases identified 51 full-text reports that fulfilled the inclusion criteria and passed the quality appraisal. We aggregated and analyzed the results from these studies and then created a narrative summary.Results: Our review demonstrates how PD causes many people to withdraw from their accustomed social roles and experience deficits in corresponding activities. We describe how PD symptoms (eg, tremor, facial masking, and neuropsychiatric symptoms) interfere with relationships (eg, couple, friends, and family) and precipitate earlier departure from the workforce. Additionally, several studies demonstrated that conventional PD therapy has little positive effect on social role functioning.Conclusions: Our report presents critical insight into how PD affects social functioning and gives direction to future studies and interventions (eg, couple counseling and recreational activities). [ABSTRACT FROM AUTHOR]

Copyright of International Journal of Eating Disorders is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Early attachment has been commonly hypothesized to predict children's future developmental outcomes, and robust evidence relying on assessments of single caregiver‐child attachment patterns has corroborated this hypothesis. Nevertheless, most often children are raised by multiple caregivers, and they tend to form attachment bonds with more than one of them. In this paper, we briefly describe the conceptual and empirical roots underlying the notion of attachment networks to multiple caregivers. We detail potential reasons for research focusing on a single caregiver (most often mothers, but recently also fathers) and the historical attempts to establish a more ecologically valid assessment of attachment to multiple caregivers. Finally, we describe a recently developed organizational framework that includes testable models on which future research may rely for assessing the predictive power of attachment networks to multiple caregivers on children's developmental outcomes. [ABSTRACT FROM AUTHOR]

Aim: Behavioral and psychological symptoms of dementia (BPSD) are common in patients with moderate–severe dementia and have negative impacts on both patients and caregivers. There is a lack of a tool for caregivers to monitor patients' BPSD by themselves. This study aimed to develop and validate a mobile application for caregivers to use in monitoring BPSD. Methods: A total of 104 pairs of patients with moderate–severe dementia and their caregivers completed the study. The Neuropsychiatric Inventory (NPI) was modified and digitally transformed to a caregiver‐rating mobile application to quantify nine domains of BPSD for their frequency and impact on the emotion of the caregivers. Data collected from the application were compared with the paper‐and‐pencil NPI for prevalence, concurrent validity (Spearman's rho) and internal consistency (Cronbach's alpha). Results: The application was able to detect 93% of BPSD compared with the NPI. Concurrent validity was good–very good when compared with the Frequency × Severity score (ρ = 0.77, P < 0.001) and the burden score (ρ = 0.85, P < 0.001) from the NPI. Levels of internal consistency were acceptable for both frequency (α = 0.73) and impact (α = 0.79) scores. 80% of the caregivers reported that the application was "very likely to be helpful in caregiving". Conclusions: The mobile application for monitoring BPSD in patients with moderate–severe dementia had an excellent sensitivity, and good–very good validity and consistency. The caregivers had a positive perception of the application as an aid in caregiving. Geriatr Gerontol Int 2021; 21: 472–477. [ABSTRACT FROM AUTHOR]

Objectives: Older Asians and Chinese are among the least studied populations in the dementia caregiving literature. This review seeks to critically synthesize the literature on intervention characteristics, components and tailoring strategies for dementia family caregivers in Chinese communities globally. Methods: Five electronic databases (PsychINFO, PubMed, CINAHL, ScienceDirect and Google Scholar) were searched for articles published between 1980 and July 2018. The protocol of this review was registered with PROSPERO (CRD42019132800). Results: Twenty‐nine unique interventions across 39 papers met inclusion criteria. Results from descriptive and thematic syntheses revealed that most interventions were psychoeducational, CBT‐based, multicomponent, structured, and less than a year in duration. Disease education, management of behavioral and psychological symptoms of dementia, stress coping techniques, and referral to community resources were frequently included in interventions. Community‐, culture‐ and language‐focused strategies were used to tailor interventions. The most common tailoring strategies were: (a) using community networks and media for outreach and recruitment; (b) making translations and language adaptations to the intervention materials; and (c) focusing on trust and therapeutic alliance. Most interventions produced desired outcomes, particularly reducing caregiver burden and increasing self‐efficacy. Conclusions: To our knowledge, this is the first review to date that systematically synthesized the characteristics and tailoring of dementia caregiving interventions for Chinese families globally. Current findings suggest that most interventions are effective, although many only superficially address Chinese culture. Future research should incorporate Chinese values and cross‐cultural challenges into caregiving interventions for deep‐level adaptations that could potentially be more effective to engage and support Chinese caregivers. [ABSTRACT FROM AUTHOR]

Objective: With the rapid development of the Internet, e-health interventions are becoming popular and are showing positive impacts. Cancer affects not only patients but also their caregivers, leading to a recognition that cancer patient-caregiver dyads cope with cancer as a unit rather than as individuals. The objectives of this paper are to explore web-based interventions for cancer patient-caregiver dyads coping with cancer from the aspects of intervention content, delivery format, outcome measurements, and outcomes and to provide recommendations on developing patient-caregiver dyadic web-based interventions for future research.Methods: Literature focused on cancer patient-caregiver dyadic web-based interventions, published in English or Chinese from the launch of five databases (CINAHL, PsycINFO, EMBase, Medline, Science Citation Index Expanded) to April 2019, was systematically searched. Manual searching through the references of full-text articles was also conducted.Results: Of a total of 812 articles, 17 articles met the inclusion criteria. The content of these web-based dyadic interventions mainly included information support, communication and support, skills-building, and psycho-education. These web-based interventions reported a small to large positive impact on patients with cancer and their caregivers in terms of physical health (d = 0.17-0.75), psychological health (d = 0.04-0.80), overall quality of life (d = 0.20-0.68), and dyadic relationship (d = 0.30-0.95).Conclusions: Web-based dyadic interventions can be designed for tailored content, which benefits both patients and their caregivers. Future research on cancer patient-caregiver web-based interventions should be conducted in diverse cultures. [ABSTRACT FROM AUTHOR]

There is a large body of work focusing on the well-being and relationships of couples facing late-stage cancer. The systemic study underpinning this paper explored a less researched topic: How do people caring for a partner with terminal cancer construct their experience and relationships through personal and couple narratives? This UK-based study drew upon dialogical approaches to narrative analysis to focus on six caring partners and their care relationships. Following individual case analysis, two methods of cross-narrative analysis were developed, and an analysis of narrative themes and a typology of archetypal narratives were drawn from the data. This paper focuses on the typology. The clinical implications of the study are considered, focusing on the contribution of a typology to this and future studies. [ABSTRACT FROM AUTHOR]

Background: Dementia presents barriers to the collaboration between individuals and the healthcare system. Caregivers perform multiple functions helping patients with basic and instrumental activities but also communicating and mediating the dyads' needs within the broader social group. Interventions focusing on caregivers show that caregiver burden can be reduced, improving patient outcomes in a cost‐effective way, but the generalisation of these findings is limited by several factors such as low participation rates of caregivers in studies. There is a global push to increase patient participation in health care, but this can be difficult for patients with dementia. Caregiver participation has arisen as a substitute, but there is a lack of standardised definitions, goals and outcome measurement tools for this participation. Methods: In 2015, the Swedish Association of Local Authorities and Regions commissioned a study on possibilities of increasing caregiver participation within the Swedish Dementia Registry (SveDem). This discussion paper updates and adapts that report, aiming to broadly summarise the caregiving phenomenon in order to provide a backdrop for clinicians seeking to understand the legal, ethical and practical considerations of caregiver participation in dementia. Relevant literature on caregiver participation is presented, and its definition, extent and practical implementation are discussed. Discussion: The Swedish legal framework compels care providers to facilitate patient and caregiver participation in dementia and provides support to caregivers through the local level of government, but further work is needed to clarify and define the extension and form that this participation must take in clinical practice. Advanced directives are one step in extending patient participation to the period of advanced dementia. Conclusion: Little research exists on caregiver participation. There is a need to develop a framework for caregiver and patient participation to determine the extent, type and form that such participation should take in health care, research and quality initiatives pertaining to persons with dementia. [ABSTRACT FROM AUTHOR]

Copyright of Physiotherapy Research International is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

There are innumerable social and ethical factors which affect one's decision to become an informal caregiver for someone with chronic illness. The existential philosophy of Jean-Paul Sartre provides unique insight into human motivation and choice. The purpose of this paper was to examine the social and ethical influences on the individual's decision to become a caregiver through the lens of Sartrean existentialism and discuss how this unique philosophy can advance nursing knowledge. The factors affecting one's choice to become a caregiver were considered using the Sartrean existential concepts of The Other, human freedom, choice, bad faith, shame and authenticity. When explored through the perspective of Sartrean existentialism, the choice to become a caregiver is strongly influenced by fear of judgement from The Other and the resulting sense of social obligation and shame. However, the interaction with The Other often results in the loss of authenticity through the pursuit of bad faith. To avert bad faith, potential caregivers must act authentically by exercising their freedom to choose and by choosing an action for its own sake and not for some extraneous purpose. The results of this philosophical inquiry contribute to nursing knowledge by providing a unique, alternative perspective by which nurses may understand the choices of potential caregivers and support them in making authentic decisions. This perspective may provide a foundation for theory development and promote further nursing knowledge which will improve caregiver health and well-being. [ABSTRACT FROM AUTHOR]

Aims. The purpose of this paper is to report the findings of an exploratory study designed to test a portion of the Theory of Collaborative Decision-Making in Nursing Practice for Triads by examining the relation between types of decisions and formation of coalitions during triadic interactions among older home healthcare clients, their caregivers and home healthcare nurses during seven admission visits for home health care. Background. Although home healthcare nurses include clients and family members in decision-making about care, few publications address the nature of interactions among triads of clients, caregivers and nurses in home health care and the association between decision-making and those interactions. Method. The data presented in this paper are a secondary analysis of data originally collected in 1994. The sample included 157 decision-making situations identified from interactions of seven triads of older home healthcare clients, their caregivers and nurses. Qualitative data were collected by participant observation and audio-recording of admission visit interactions among clients, caregivers and nurses. Content analysis, augmented by Ethnograph software, was used to analyse the data. Findings. Coalitions were evident in just eight of the 157 decision-making situations. All of the theoretically possible types of nursing care decisions (programme, operational control, agenda) were observed. Each coalition involved one nursing care decision; two coalitions formed in one triad. Seven coalitions formed between nurse and caregiver against client during two programme and five operational control decisions. One coalition formed between client and caregiver against nurse during an agenda decision. No coalitions formed between client and nurse against caregiver. Conclusions. Although the study sample was small, the findings expand understanding of the relation between types of decisions and formation of coalitions during triadic interactions in home health care, and provided empirical support for a portion of the Theory of Collaborative Decision-Making in Nursing Practice for Triads. [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]

Objectives: The purpose of this paper is to analyze the social organization of caring as gendered work as it relates to meal preparation and consumption activities surrounding older adult cancer patients and their caregivers. Methods: Qualitative methods consisting of in-depth, semi-structured, face-to-face interviews with 30 older cancer patients (17 women and 13 men aged 68–90) and their caregivers were conducted separately. Participants were diagnosed with pancreatic, colon, breast, lymphoma, skin, and head and neck cancer. Results: Major findings were that both patients and caregivers experienced distress surrounding food preparation and mealtime activities, and these varied according to the gender of both patients and caregivers and the relationship that existed between patients and caregivers. Of particular note, female patients experienced distress over not being able to fully participate in meal planning and cooking activities that were central to their self-identity. Related to this, male spouses experienced frustration over not being able to engage in cooking activities that met their wives' expectations. Female caregivers expressed tremendous discontent that the one they were caring for did not eat like they ‘should’. Discussion: Matters related to the organization of meals and food consumption activities may be a source of significant distress for patients and caregivers. Further research and greater attention from health care providers are warranted to evaluate the extent of such distress. Copyright © 2010 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

A qualitative tool was recently developed for evaluation of dependency in a demented population. This tool assesses the impact of cognitive impairment on functional status, taking into account disability in both the basic and the instrumental activities of daily living. The purpose of the present paper was to study the impact of dependency on informal caregivers who assist demented patients at home, with this new useful tool. Methods: A cross-sectional analysis was undertaken of the subgroup of 145 demented patients of the National Dementia Economic Study, aged ≥65 years, living in the community, with an available caregiver. A neuropsychological assessment of patients (Mini-Mental State Examination) and a comprehensive evaluation of caregivers (quality of life, Short Form Health Survey-36, depression, Sense of Competence) were recorded. A total of 32.4% were dependent, disabled in both basic and instrumental functions, 42.1% were non-dependent but with instrumental functional disabilities and 25.5% were non-dependent. Impact of dependency on the caregiver's experience was significant for different aspects (satisfaction with caregiving, subjective burden, quality of life, depression). Medical and non-medical costs increased with the severity of functional disability. Findings indicate that this tool is also useful to assess the impact of progression of functional disability in patients with dementia, on the caregiver issues. The consequences appeared both on personal feelings and on quality of life and financial involvement in management of the patient. Cognitive impairment appears to have more moderate repercussions in these areas. [ABSTRACT FROM AUTHOR]

Aims. This paper reports the development of the Expectations of Filial Piety Scale for use with Hispanic/Latino parents regarding their expectations of care and support from their adult children. Background. Filial piety, a term used to describe a set of family values in relation to parental care and respect, has strong cultural underpinnings. To date, there have been no measures of this construct for use with Hispanic/Latino populations. Methods. A convenience sample of 318 Hispanic/Latino adults in North Carolina and Texas in the United States of America completed a brief biographical survey and field-tested a new Spanish version of the Expectations of Filial Piety Scale in 2003. Results. Principal component factor analysis with orthogonal rotation (varimax method) was used to extract four factors, which accounted for 60% of the variance in scale scores. These factors were: I, respect for parents (23·6%); II, honouring parents (12·5%); III, supporting parents (11·9%); and IV, family unity (11·7%). Overall scale reliability was 0·82, with individual factor reliability coefficients ranging from 0·66 to 0·84. Conclusions. Increasingly, large numbers of Hispanic/Latino elders will look to their families for support as they reach advanced ages. Culturally relevant translations of family caregiving constructs, such as filial piety, will be essential nursing tools for clinical practice and in developing contemporary family caregiver research agendas. [ABSTRACT FROM AUTHOR]

Education is the key element in medical science. It is generally divided into pre-graduate, postgraduate and continuing medical education, with the physician as the main target. It usually covers aetiology, diagnosis, treatment, prognosis, outcome and long-term effects. Neurology is a large field in medical science, focusing on diseases of the brain, the spinal cord, the peripheral nerves and muscles. They tend to be chronic and, often progressive, leading to long-term disability and handicap for the individual, frequently associated with personal, social and emotional consequences. In the time span of a patient with a neurological disease, interaction with physicians is important and often vital, but interaction with other health groups and relatives or other caregivers is longer and more intensive. The knowledge and experience of the patient and caregiver is equally important, in that an informed patient or caregiver is more likely to participate actively and be of greater benefit in disease management. This paper promotes the concept that education in neurology should be integrated to include the physicians and other professionals as well as patients, caregivers and public. A broader awareness of neurological diseases will draw support and improve the approach of society to the provision of resources and management of these illnesses, as well as public attitude towards the symptoms and to those who live with them. Two bodies have collaborated in writing this article: the education committee of the EFNS and the EFNA. [ABSTRACT FROM AUTHOR]

This systematic review aimed to examine the caregivers' knowledge with burned children and related factors towards burn first aid. A comprehensive, systematic search was performed in different international electronic databases, such as Scopus, PubMed, Web of Science, and Persian electronic databases such as Iranmedex, and Scientific Information Database using keywords extracted from Medical Subject Headings such as "Knowledge", "First aid", "Caregiver", "Burn", and "Child" from the earliest to the December 1, 2022. The quality of the studies included in this systematic review was evaluated by using the appraisal tool for cross‐sectional studies (AXIS tool). A total of 11 763 caregivers of children with burns were enrolled in 14 studies. Of the participants, 78.81% were female and 41.15% had a university education. The mean score of caregivers' knowledge with burned children towards burn first aid was 51.44 out of 100. The knowledge of caregivers of burned children towards burn first aid had a significant positive relationship with the level of education, first aid training, age of caregivers, history of burn, number of children, monthly income, social status, and attitude. In addition, caregivers' knowledge had a significant negative relationship with the number of children. Furthermore, there was a significant relationship between caregivers' knowledge and level of education, monthly income, smoking, and previous knowledge of first aid. The level of caregivers' knowledge with burned children towards burn first aid was moderate. Therefore, health managers and policymakers can improve the knowledge of caregivers of burned children towards burn first aid by creating suitable platforms for face‐to‐face training as well as online training using websites. [ABSTRACT FROM AUTHOR]

Introduction: Predicting caregiver burden in individuals with suspected dementia – is critical due to the debilitating nature of these disorders and need for caregiver support. While some examination of the factors affecting burden has been undertaken in Sub‐Saharan Africa, each country presents with its own unique challenges and obstacles. This pilot study investigates predictors of caregiver burden in family caregivers of individuals with suspected dementia living in the Democratic Republic of the Congo (DRC). Methods: Linear and multiple regression analyses were conducted to explore factors associated with caregiver burden in 30 patient‐caregiver dyads with the Zarit Burden Interview (ZBI) for caregiver burden evaluation. Cognitive impairments of patients were assessed using the Community Screening Instrument for Dementia, Alzheimer's Questionnaire (AQ), the African Neuropsychology Battery, and the Neuropsychiatric Symptoms Inventory (NPI). Results: Average caregiver burden on the ZBI was 36.1 (SD = 14.6; range = 12–58). Greater impairments in patient cognition (orientation, visuospatial, memory, executive functioning), fragility, and neuropsychiatric symptoms (delirium, agitation, depression) were predictive of caregiver burden. After controlling for AQ scores and caregiver gender, greater symptoms of depression, and worse performances on verbal memory and problem solving were associated with greater caregiver burden. Conclusion: Worsening patient fragility, cognition, functioning, and neuropsychiatric symptoms influenced caregiver burden in caregivers of individuals with suspected cognitive impairment in the DRC. These findings are consistent with the prior literature. Future studies may wish to explore supportive factors and caregiver specific characteristics that buffer against perceived burden. Key points: It is critical to predict caregiver burden in individuals with suspected dementia due to the debilitating nature of these disorders and need for caregiver support.While some examination of the factors affecting caregiver burden has been undertaken in Sub‐Saharan Africa, these findings have had little impact on clinical care or research in Democratic Republic of Congo (DRC) where dementia is considered as "witchcraft."This study has shown that the worsening of patient fragility, cognition, functioning, and neuropsychiatric symptoms influenced caregiver burden in caregivers of individuals with suspected cognitive impairment in the DRC. [ABSTRACT FROM AUTHOR]

Objects: Dementia has physical, social and economic impacts, causing considerable distress for people with age‐related cognitive impairment (PWACI) and their caregivers. Electronic health (e‐health) interventions can provide convenient education to improve the coping competence of caregivers and have become an important approach to supporting them. Understanding the economic evidence of e‐health interventions will facilitate the decision making and implementation of integrating e‐health into routine health services. The present review aimed to appraise economic evidence related to e‐health interventions for PWACI and their caregivers. Methods: We systematically searched multiple cross‐disciplinary databases from inception to February 28, 2023. Two reviewers independently selected the trials, assessed the quality, and checked the data. A descriptive‐analytical narrative method was used to analyze the review findings. Results: Thirteen studies were analyzed, including 12 randomized controlled trials and one quasi‐experimental study. All included studies were conducted in developed countries. The included studies reported limited economic information. There were six cost‐effectiveness analysis, five cost‐consequence analysis and one partial economic evaluation. The included studies were heterogeneous, and varied in quality. The results demonstrated that e‐health multicomponent interventions can reduce the cost of health service utilization in short term (10–104 weeks). Conclusions: Few studies calculated the incremental cost‐effectiveness ratio to evaluate the cost‐effectiveness of e‐health interventions. Preliminary evidence indicates that e‐health interventions can reduce the cost of health service utilization in the short term, but the cost‐effectiveness of e‐health interventions hasn't been identified. More robust evidence is needed to clarify the value of e‐health interventions for PWACI and their caregivers. Key points: This review identifies the characteristics of e‐health interventions for PWACI and their caregivers in economic evaluations through cost‐effectiveness analysis and cost‐consequence analysis.Preliminary evidence suggests that e‐health interventions can reduce the cost of health service utilization in the short term (10–104 weeks), but the cost‐effectiveness should be identified further.The results of this study contribute to the understanding of the economic effects of e‐health based on existing evidence and provide more robust evidence‐based practices.More long‐term and high‐quality economic evaluation trials are warranted to determine the value of e‐health interventions for PWACI and their caregivers. [ABSTRACT FROM AUTHOR]

Key Points: Prognostic understanding among advanced cancer patients is associated with higher levels of engagement in advance care planning (ACP), preference for comfort over aggressive care, and receipt of goal‐concordant care, but few patients have accurate prognostic understanding.Talking about Cancer (TAC) is a communication‐based intervention for advanced cancer patients and their caregivers designed to improve shared accurate prognostic understanding.This case study describes the use of TAC with an interracial friend dyad for whom medical mistrust and experienced bias on the part of the patient significantly impacted interactions with the medical team.Using TAC strategies, this dyad was able to improve communication with the oncology team and each other and engage in ACP. [ABSTRACT FROM AUTHOR]

Objective: Fear of cancer recurrence (FCR) is reported by both cancer survivors and caregivers however less is known about caregiver FCR. This study aimed to (a) conduct a meta‐analysis to compare survivor and caregiver FCR levels; (b) examine the relationship between caregiver FCR and depression, and anxiety; (c) evaluate psychometric properties of caregiver FCR measures. Methods: CINAHL, Embase, PsychINFO and PubMed were searched for quantitative research examining caregiver FCR. Eligibility criteria included caregivers caring for a survivor with any type of cancer, reporting on caregiver FCR and/or measurement, published in English‐language, peer‐review journals between 1997 and November 2022. The COnsensus‐based Standards for the selection of health status Measurement INstruments (COSMIN) taxonomy was used to evaluate content and psychometric properties. The review was pre‐registered (PROSPERO ID: CRD42020201906). Results: Of 4297 records screened, 45 met criteria for inclusion. Meta‐analysis revealed that caregivers reported FCR levels as high as FCR amongst survivors, with around 48% of caregivers reporting clinically significant FCR levels. There was a strong correlation between anxiety and depression and medium correlation with survivor FCR. Twelve different instruments were used to measure caregiver FCR. Assessments using the COSMIN taxonomy revealed few instruments had undergone appropriate development and psychometric testing. Only one instrument met 50% or more of the criteria, indicating substantial development or validation components were missing in most. Conclusions: Results suggest FCR is as often a problem for caregivers as it is for survivors. As in survivors, caregiver FCR is associated with more severe depression and anxiety. Caregiver FCR measurement has predominately relied on survivor conceptualisations and unvalidated measures. More caregiver‐specific research is urgently needed. [ABSTRACT FROM AUTHOR]

Background and Aims: As the nowadays provision of many healthcare services relies on technology, a better understanding of the factors contributing to the acceptance and use of technology in health care is essential. For Alzheimer's patients, an electronic personal health record (ePHR) is one such technology. Stakeholders should understand the factors affecting the adoption of this technology for its smooth implementation, adoption, and sustainable use. So far, these factors have not fully been understood for Alzheimer's disease (AD)‐specific ePHR. Therefore, the present study aimed to understand these factors in ePHR adoption based on the perceptions and views of care providers and caregivers involved in AD care. Methods: This qualitative study was conducted from February 2020 to August 2021 in Kerman, Iran. Seven neurologists and 13 caregivers involved in AD care were interviewed using semi‐structured and in‐depth interviews. All interviews were conducted through phone contacts amid Covid‐19 imposed restrictions, recorded, and transcribed verbatim. The transcripts were coded using thematic analysis based on the unified theory of acceptance and use of technology (UTAUT) model. ATLAS.ti8 was used for data analysis. Results: The factors affecting ePHR adoption in our study comprised subthemes under the five main themes of performance expectancy, effort expectancy, social influence, facilitating conditions of the UTAUT model, and the participants' sociodemographic factors. From the 37 facilitating factors and 13 barriers identified for ePHR adoption, in general, the participants had positive attitudes toward the ease of use of this system. The stated obstacles were dependent on the participants' sociodemographic factors (such as age and level of education) and social influence (including concern about confidentiality and privacy). In general, the participants considered ePHRs efficient and useful in increasing neurologists' information about their patients and managing their symptoms in order to provide better and timely treatment. Conclusion: The present study gives a comprehensive insight into the acceptance of ePHR for AD in a developing setting. The results of this study can be utilized for similar healthcare settings with regard to technical, legal, or cultural characteristics. To develop a useful and user‐friendly system, ePHR developers should involve users in the design process to take into account the functions and features that match their skills, requirements, and preferences. [ABSTRACT FROM AUTHOR]

Aim: To explore the relationship between filial obligation and caregiver depression across cultures. Design: Systematic review and meta‐analysis. Methods: Twelve databases were reviewed for dissertations and peer‐reviewed articles on filial obligation and caregiver depression among adult children, published before January 2020. In total, 476 titles and abstracts were retrieved. Final analysis included six studies; of these, four were included in the meta‐analysis. Results: Fixed‐effects model indicated that a stronger perception of filial obligation was associated with increased depressive symptoms among caregivers across cultures (β = 0.14, 95% CI [0.04, 0.24], p < 0.01, N = 394). However, a non‐significant effect size in the correlation between these two variables was found in samples predominated by Caucasian and mixed‐blood caregivers (r = 0.03, 95% CI [−0.03, 0.10], p > 0.05, N = 880). Therefore, caregivers' perceptions of filial obligation should be clinically assessed and normalised to reduce their depressive symptoms. [ABSTRACT FROM AUTHOR]

Objective: Family caregivers are often intensively involved in palliative and end‐of‐life cancer care. A variety of interventions to support family caregivers have been developed, differing in target population, modality, and components. We aimed to systematically examine characteristics and the effectiveness of interventions to support family caregivers of patients with advanced cancer. Methods: A systematic review was conducted using Embase, Medline Ovid, Web of Science, Cochrane, Google Scholar, and Cinahl. This review included quantitative studies published from January 2004 until January 2020 reporting on interventions to support family caregivers of patients with advanced cancer in all care settings. Results: Out of 7957 titles, 32 studies were included. Twenty‐two studies were randomized controlled trials. Interventions were delivered to four target populations: individual family caregivers (n = 15), family caregiver‐patient dyads (n = 11), families (n = 2) and peer groups (n = 4). Most interventions (n = 26) were delivered face‐to‐face or by phone, two were delivered online. Most interventions included multiple components and were primarily aimed at supporting family caregivers' self‐care. Twenty‐nine interventions were shown to have beneficial effects on family caregiver outcomes, mostly in the psycho‐emotional (n = 24), daily functioning (n = 13) and social dimension (n = 6). Individual interventions were mainly effective in the psycho‐emotional dimension, dyad and family interventions in the psycho‐emotional and social domain, and group interventions mainly had an effect on daily functioning. Conclusions: Interventions to support family caregivers in advanced cancer care vary widely. Most intervention studies reported beneficial effects for the wellbeing of family caregivers. There is evidence that the target group is associated with beneficial effects on different outcome dimensions. [ABSTRACT FROM AUTHOR]

Introduction: We evaluated determinants associated with care partner outcomes along the Alzheimer's disease (AD) stages. Methods: We included n = 270 care partners of amyloid‐positive patients in the pre‐dementia and dementia stages of AD. Using linear regression analysis, we examined determinants of four care partner outcomes: informal care time, caregiver distress, depression, and quality of life (QoL). Results: More behavioral symptoms and functional impairment in patients were associated with more informal care time and depressive symptoms in care partners. More behavioral symptoms were related with more caregiver distress. Spouse care partners spent more time on informal care and QoL was lower in female care partners. Behavioral problems and subtle functional impairment of the patient predisposed for worse care partner outcomes already in the pre‐dementia stages. Discussion: Both patient and care partner determinants contribute to the care partner outcomes, already in early disease stages. This study provides red flags for high care partner burden. [ABSTRACT FROM AUTHOR]

Background: Childhood cancer is proportionately higher in Africa and these result in increased demands on caregivers. The inability of affected children to take care of themselves; coupled with prescribed medical interventions presents physical and social burdens on family caregivers. Aims and methods: This study used a qualitative exploratory design to explore the physical and socioeconomic challenges for family caregivers of children diagnosed with cancer and receiving care at one of the biggest tertiary hospitals in Ghana. A total of thirteen family caregivers of children with cancer were interviewed. Findings: Two major themes were identified: Burden of care on Physical Health and Socioeconomic burdens of caregiving on the family caregiver. It was reported that family caregivers encounter physical challenges such as Aches and Pains when performing caregiving activities, Loss of Appetite, Fatigue, Compromised Functional State and Sleep Disruption. The second theme, Socioeconomic burdens of caregiving on family caregivers account for the consequences of caregiving on social lives, family relationships, finance and employment. Conclusions and recommendations: The study recommends that measures that provided relief for the caregivers such as teaching them to adopt local measures of pain relief such as massage should be encouraged. Policies should adopt measures that encourage caregivers to have some days of rest whiles providing care to their children with cancer. Also, health insurance packages that provide relief for the cost of accessing healthcare, should be extended to children with cancers to support their caregivers. [ABSTRACT FROM AUTHOR]

Aim: The aim of the study was to describe different eHealth literacy domains among parents of children needing paediatric surgery in Sweden, and the correlation between these eHealth literacy domains and parents' socioeconomic factors and demographic characteristics. Design: Descriptive correlational design. Method: Thirty‐five Swedish‐speaking parents participated as a historical control group within an ongoing Swedish clinical trial developing eHealth solutions for families after hospital care; of these, 30 completed the eHealth Literacy Questionnaire and the socioeconomic and demographic questionnaire. Results: Of the seven eHealth literacy domains assessed, parents' strengths lay in those pertaining to their own digital competence, control and safety, while their weakness concerned their motivation to engage with digital services, and their ability to access eHealth platforms that work. Overall, parents presented adequate eHealth literacy. Of the five socioeconomic and demographic variables assessed (i.e. monthly wages, education levels, age, gender and residency), monthly wages correlated the strongest, and positively, with the seven eHealth literacy domains. [ABSTRACT FROM AUTHOR]

Background and Aims: Mental health institutions and community organizations have had difficulty recruiting patients and caregivers onto their Patient, Family, and Community Advisory Committees (PFACs). Previous research has focused on barriers and enablers of engaging patients and caregivers who have advisory experience. This study acknowledges the experiential difference between patients and caregivers by focusing only on caregivers; further, we compare the barriers and enablers between advising versus non‐advising caregivers of loved ones with mental illness. Methods: Data from a cross‐sectional survey codesigned by researchers, staff, clients, and caregiver affiliated with a tertiary mental health center were completed by n = 84 caregivers (n = 40 past/current PFAC advising caregivers; n = 44 non‐advising caregivers). Results: Caregivers were disproportionately female and late middle‐aged. Advising and non‐advising caregivers differed on employment status. There were no differences of the demographics of their care‐recipients. More non‐advising caregivers reported being hindered from PFAC engagement by family‐related duties and interpersonal demands. Finally, more advising caregivers considered being publicly acknowledged as important. Conclusions: Advising and non‐advising caregivers of loved ones with mental illness were similar in demographics and in reporting the enablers and hindrances that impact PFAC engagement. Nevertheless, our data highlights specific considerations that institutions/organizations should consider when recruiting and retaining caregivers on PFACs. Patient or Public Contribution: This project was led by a caregiver advisor to address a need she saw in the community. The surveys were codesigned by a team of two caregivers, one patient, and one researcher. The surveys were reviewed by a group of five caregivers external to the project. The results of the surveys were discussed with two caregivers involved directly with the project. [ABSTRACT FROM AUTHOR]

Objective: This systematic review examined the agreement of proxy ratings of depression and anxiety in neuro‐oncology patients. Methods: Searches were conducted across 4 databases (MEDLINE, Embase, PsycINFO, CINAHL, and Web of Science) to identify studies that compared proxy ratings (non‐health care providers) of anxiety and depression in patients with brain cancer. Methodological quality and potential risk of bias were evaluated using the Joanna Briggs Institute Critical Appraisal Checklist. Results: Out of the 936 studies that were screened for inclusion, 6 were included for review. The findings were mixed in terms of whether patient and proxy ratings were accurate (e.g., deemed equivalent), with many of the selected studies suggesting moderate level of agreement for several of the selected studies and, when both depression and anxiety were included, depression ratings from proxy raters were more accurate than for anxiety. We identified important limitations across the selected articles, such as low sample size, clarity on defining proxy raters and the different instructions that proxy raters are given when asked to assess patients' mood symptoms. Conclusions: Our findings suggest that proxy ratings of depression and anxiety should be interpreted with caution. While there is some agreement in proxy and patients with brain cancer ratings of depression and anxiety (greater agreement for depression), future work should recruit larger samples, while also remaining mindful of defining proxy raters and the instructions given in collecting these ratings. [ABSTRACT FROM AUTHOR]

Background: The quality of communication (QOC) questionnaire has been widely used to assess foundational aspects of patient‐clinician communication about end‐of‐life (EOL) care. However, this instrument has never before been fielded with primary care patients who have cognitive impairment and their caregivers, a population with unique communication needs. Design: We report on baseline data from a completed pilot study and ongoing efficacy trial of advance care planning involving dyads of primary care patients ages 80 and older with cognitive impairment and their family care partners. Two QOC subscales assessed ratings of general communication and EOL care communication from 0 ("worst") to 10 ("best"). Due to challenges piloting the EOL subscale, we integrated skip logic to improve cognitive accessibility and measurement precision. Participants were first asked whether EOL communication occurred (yes/no); those responding affirmatively were subsequently asked to rate communication. We report experiences with EOL subscale adaptations from our ongoing trial (NCT04593472). Results: Using the original instrument in our pilot (13 dyads), mean patient and family general communication ratings were similar (9.65 and 9.60, respectively), but EOL ratings diverged (4.23 and 5.88, respectively), and "Don't Know" comprised 5% of patient and 32% of family responses. Interviewers reported patient and family participants expressed confusion when asked to rate EOL communication behaviors that had not occurred. Using the adapted instrument in our efficacy trial (43 dyads), EOL communication behaviors were most often reported as not having occurred (76% of patient and 73% of family responses across all items). Mean patient and family EOL subscale ratings were similar (2.23 and 2.26) and responses of "Don't Know" were minimal (<1%). Conclusion: The original QOC EOL subscale involves rating conversations that rarely occur in primary care but are important for older adults with cognitive impairment. Subscale adaptations may reduce confusion and response uncertainty and improve measurement accuracy. [ABSTRACT FROM AUTHOR]

Aim: To develop a transcultural adaptation of the Revised Caregiving Appraisal Scale among Spanish caregivers of dependent older people and to test the psychometric properties of the scale. Design: Cross‐sectional study. Methods: The Revised Caregiving Appraisal Scale was transculturally adapted to the Spanish population following the methodology of direct and back translation. The Spanish version of the Revised Caregiving Appraisal Scale was administered to a total of 182 family caregivers of older dependent people. The study began in January 2016 and ended in December of the same year. The construct validity was studied by means of the scree plot and parallel analysis. The exploratory factorial analysis was carried out, and the correlation between factors was studied. To verify the reliability of the process, Cronbach's alpha and homogeneity were calculated by the corrected total item correlation. The validity of the convergent criterion was studied by means of the Pearson correlation coefficient, using the Zarit Caregiver Load Interview and the Family Satisfaction Scale as the gold standard. Results: The construct validity revealed three factors: 'Subjective Burden' (15 items), 'Satisfaction' (7 items) and 'Competence' (3 items). The Cronbach alpha was.86 for 'Subjective Burden',.74 for 'Satisfaction' and.74 for 'Competence'. The corrected total item correlation was greater than.25. The validity of the convergent criterion of the 'Subjective Burden' and 'Competence' factors with the 'Zarit Caregiver's Load Interview' presented a very high statistically significant correlation, unlike 'Satisfaction' which presented a low positive correlation with the 'Family Satisfaction Scale'. Conclusion: The Spanish version of the Revised Caregiving Appraisal Scale is a valid and reliable scale according to the tests performed on a random sample of family caregivers of older dependent people in Spain. Impact This scale will enable the simultaneous assessment of negative ('Subjective Burden' and 'Competence') and positive ('Satisfaction') perceptions among family caregivers of older dependent people. [ABSTRACT FROM AUTHOR]

Background: A sense of coherence (SOC) could help us better understand why there are individuals who cope better than others in similar situations. The study aimed to assess the effect of SOC on the course of burden reports in relatives of persons with dementia.Methods: This was a prospective cohort study of 156 dementia carers. The SOC was assessed by the Orientation to Life Questionnaire (OLQ-13), burden by Burden Interview, and personal and contextual characteristics were collected via ad hoc questions. The main dementia symptoms, including functional difficulties (Disability Assessment for Dementia), neuropsychiatric symptoms (Neuropsychiatric Inventory), and cognitive impairment (Mini-Mental State Examination), were also assessed. A general linear model was adjusted to determine the effect of SOC and other covariates on burden throughout the follow-up. Burden differences between baseline and 12 and 24 months were analysed, and the baseline OLQ-13 score was grouped by quartiles.Results: The global burden reported increased after 24 months (F = 9.98; df = 2; p < 0.001), but not equally for all carers; daughters reported the greatest increase. SOC, functional disability, and neuropsychiatric disorders showed a significant effect on burden, but time did not. Carers with higher SOC at baseline tend to remain with lower burden levels, whereas carers with low SOC reported higher burden at each visit.Conclusions: This study reports evidence of the effect of SOC on burden at baseline, 12 and 24 months of follow-up. Burden scores differ by carers' SOC; those with higher SOC showed lower burden levels, whereas the low-SOC group reported a greater burden at each visit. [ABSTRACT FROM AUTHOR]

Objectives: When patients with advanced cancer pursue phase 1 clinical trials, family caregivers are impacted as they adopt new roles and responsibilities in time‐pressured, uncertain circumstances. This study explored the nature of the caregivers' participation in patients' decision to pursue phase 1 clinical trials and the early impact of the decision on the caregiver. Methods: Semi‐structured interviews were conducted with 19 family caregivers of advanced cancer patients who had agreed to participate in phase 1 clinical trials. They were coded for information about the caregiver's relationship with the patient, typical style of decision‐making together, understanding of the patient's prognosis and trial, contributions to decision‐making and the initial impacts of the trial on the caregiver. Codes illuminating the research questions were grouped into categories and themes, compared across transcripts and examined against the literature. Results: Caregivers unequivocally supported the patients' decision to pursue the phase 1 trial as they hoped that the patient would derive medical benefit from the trial. They withheld their opinions and fears about the trial from the patients to support patient autonomy during the decision‐making process. The patient's decision to participate increased the caregivers' burdens and deprived them of time spent on pleasurable activities at end of life. Conclusions: Respecting the patients' personal autonomy, caregivers supported the trial, despite the complex caregiving required. As the success of phase 1 trials relies on caregiver involvement, it is imperative that healthcare professionals be sensitized to the support needs of these caregivers. [ABSTRACT FROM AUTHOR]

Objective: Adolescent and young adult (AYA) cancer survivors are vulnerable to cancer‐related financial burden, which is likely shared by their caregivers. This study aims to enhance an existing conceptual model of financial burden by conducting concept elicitation interviews with caregivers to generate knowledge that can be translated to inform instrumental and psychosocial support in cancer care. Methods: Qualitative concept elicitation interviews were conducted with 24 caregivers of AYA cancer survivors (caregivers of adolescents, n = 12; caregivers of emerging adults, n = 12) recruited from four sites. Constant comparative methods were used to identify themes, and results were interpreted and organized into domains of the conceptual model. We also explored COVID‐19 related financial impacts among a subset (n = 12) of caregivers. Results: Seven themes emerged, which varied by age group and strengthened the conceptualization of the model. Themes centered on: (1) direct and indirect costs of cancer; (2) impact of socioeconomic status on financial burden; (3) caregiver desire to shield AYAs from distress due to financial burden; (4) strategies to manage cancer‐related costs; (5) worries about AYAs' financial future; (6) seeking and receiving financial support; and (7) navigating the healthcare system. Findings also revealed that COVID‐19 exacerbates financial burden for some caregivers. Conclusions: Building upon our prior work, we have adapted the conceptual model of financial burden to reflect perspectives of AYAs, oncology providers, and now, caregivers. An important next step is to develop a reliable and valid self‐report measure of financial burden among caregivers of AYA cancer survivors. [ABSTRACT FROM AUTHOR]

Objective: Partners of cancer patients are the primary supporters and burdened at the same time. Support for partners is hitherto scarce and existing offers are rarely used. The PartnerCARE online intervention was specifically developed to address the caregiving partners' needs. This two‐arm parallel randomized controlled trial (RCT) evaluates the feasibility, acceptability, and potential efficacy of PartnerCARE. Methods: Sixty German‐speaking partners of patients with various cancer entities were randomized into two conditions: intervention group (IG) with PartnerCARE (N = 30) or waitlist‐control group (N = 30). Participants completed online questionnaires at baseline (T0), post‐treatment (T1) and 4‐months follow‐up (T2). Feasibility and acceptability outcomes included dropout rates, use and acceptance of PartnerCARE, individual user/e‐coach feedback as well as negative effects. Relevant efficacy outcomes were assessed to test for potential intervention effects. Results: Recruitment success illustrates demand for and acceptability of PartnerCARE. Satisfaction with the intervention was high (Client Satisfaction Questionnaire adapted to Internet‐based interventions, T1: M = 24.66, SD = 6.42) and 73.3% of participants completed the intervention. Study dropout rate was low (T1: 17%, T2: 29%). More positive than negative side effects of the intervention were identified, and negative ones were mainly related to "intrapersonal change". For efficacy outcomes we found effects over time, with strongest effects within the IG from T0 to T1 in psychological distress (d = 0.73, 95%‐CI: [0.34; 1.12]) and anxiety (0.66, [0.26; 1.04]), but no group effects were significant at T1 and T2. Conclusions: PartnerCARE is feasible, acceptable and potentially efficacious. Based on received feedback, PartnerCARE is currently undergoing further development and subsequently efficacy will be investigated in a RCT. Trial Registration: German Clinical Trial Registration: DRKS00017019. Registered on 08 April 2019. [ABSTRACT FROM AUTHOR]

Aim: Parental caregivers of children with Down Syndrome (DS) have a greater burden of daily activities that may affect their health. The aim of this exploratory study was to evaluate the impact of caregiving of children with Down syndrome on parenting quality of life, stress, mental and oral health. Methods: Fifty‐four parental caregivers of children with DS and 51 parents of children without physical or mental disabilities participated of this study. All participants were clinically examined to evaluate the presence of dental caries, gingival conditions and answered a sociodemographic questionnaire. Depression, anxiety, quality of life and coping strategies were assessed using specific instruments. Hair cortisol level was assessed as biological marker of chronic stress. Results: Psychological and quality of life parameters were similar between the groups of caregivers (p >.05). Caregivers of children with DS were older (48.6 vs. 41.5, p <.001), had longer caregiving period (> 10 vs < 10 years, p =.003), presented higher gingival bleeding index (6.1 vs. 4.7, p =.014) and higher cortisol levels (55.9 vs. 38.4, p =.07) as compared with parents of children without disabilities. Sociodemographic data has no influence on cortisol levels (p >.05). Conclusions: These findings suggest that the caregiving of children with DS has an impact on parenting oral health and stress. [ABSTRACT FROM AUTHOR]

The present study aimed to investigate the personal well‐being and family distress of Italian caregivers during the lockdown. Five hundred sixty‐five family caregivers and 638 age‐ and sex‐matched noncaregivers completed a web‐based survey. The following scales were administered to all participants: General Health Questionnaire‐12 items (GHQ‐12), Insomnia Severity Index (ISI), Brief Resilient Coping Scale (BRCS), and Family Distress Index (FDI). Caregivers were also asked to provide information about their family members with disabilities. Individual and family distress, as well as insomnia, were significantly higher in caregivers than controls. Contrariwise, caregivers reported lower resilience levels. Multiple linear regression showed that distress was higher in caregivers living in Central and Southern Italy. Individual well‐being was negatively predicted by low independence measured by the activities of daily living (ADL). Family distress was higher in households of psychiatric patients. Finally, low resilience levels appeared as the strongest predictors of both individual and family distress. The lockdown caused severe distress among caregivers and families of people with disabilities. Support networks for people with disabilities and their families are fundamental to prevent severe consequences from a psychological, social, and economical point of view. [ABSTRACT FROM AUTHOR]

Objective: To identify factors associated with caregiver distress among home care clients in New Zealand. Methods: The cohort consisted of 105,978 community‐dwelling people aged 65 years or older requiring home care services in New Zealand who had at least one informal caregiver. Bivariate and multivariable logistic regression analyses were used to identify factors associated with caregiver distress. Results: Variables associated with risk of caregiver distress included Depression Rating Scale score, aggressive behaviour symptoms, primary informal caregiver relationship to patient, Cognitive Performance Scale score, Changes in Health, End‐stage disease, and Signs and Symptoms Scale score, informal care time, secondary informal caregiver relationship to care recipient, activities of daily living hierarchy scale score and any hospitalisation. Conclusions: The study has identified important characteristics that are associated with caregiver stress. These results suggest that caregiver distress can be relieved by promoting protective factors and aiming to reduce risk factors among home care clients in New Zealand. [ABSTRACT FROM AUTHOR]