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Background: Communication difficulties are common in people with dementia, and often present from an early stage. However, direct treatment options for people with dementia that positively influence their daily communication are scarce. Aims: To evaluate the potential impact and feasibility of a personalized logopaedic intervention. Methods & Procedures: A total of 40 community‐dwelling persons with dementia and their caregivers were recruited. Five experienced speech and language therapists (SLTs) delivered the six‐session Com‐mens intervention at home. Com‐mens aims to improve positive communication between people with dementia and their primary caregivers and comprises five elements: interactive history‐taking, dynamic observational assessment, education about the consequences of dementia on communication, development and use of personalized communication tools, use motivational, and person‐centred strategies by the SLT. We conducted a single‐group mixed‐methods pilot study with five measurements: baseline, directly after intervention, and at 3, 6 and 9 months follow‐up. Semi‐structured interviews and questionnaires for Experienced Communication in Dementia, quality of life, psychological well‐being and caregiver burden were conducted. Process evaluation was performed by interviewing participants, drop‐outs, SLTs and other stakeholders. Outcomes & Results: A total of 32 dyads completed the intervention. Repeated measures analyses revealed no significant changes over time. In the interviews, participants reported a positive impact on their feelings, increased communication skills and better coping with the diagnosis. Participants would recommend the intervention to others. Facilitators were timely delivery, personalized content and adequate reimbursement. Barriers were unfamiliarity with Com‐mens among referrers, an overburdened caregiver or disrupted family relationships. Conclusions & Implications: This newly developed logopaedic intervention is feasible and has a perceived positive impact on both people with dementia and their caregivers, which is confirmed by a stable pattern over a period of 1 year. Future comparative studies are needed to test the effectiveness of personalized interventions in this patient population. What this paper adds: What is already known on the subject?: SLTs are experts in the field of communication, but even though communication problems are common between people with dementia and their caregivers, there is a lack of logopaedic guidelines and materials for the direct treatment for this population. Interventions that are available either focus on (professional) caregivers only or aim to enhance cognitive functioning and do not target on joined communication. What this paper adds to the existing knowledge?: A newly developed intervention called Com‐mens can be provided by trained SLTs and takes an average of six 1‐h sessions. The intervention is perceived to be valuable and feasible for people with dementia and their caregivers, by the participants themselves, as well as by healthcare professionals and other stakeholders. What are the potential or actual clinical implications of this work?: Dissemination of this intervention will give SLTs skills, tools and materials to provide meaningful care to home‐dwelling persons with dementia and their caregivers. Also, persons with dementia and their caregivers will receive education and materials that can help them increase their understanding of communication problems, enhance their communication skills and better cope with the communication problems that result from dementia. We consider the Com‐mens intervention to be a valuable addition to the field of speech language therapy and dementia. [ABSTRACT FROM AUTHOR]

Background: The COVID‐19 pandemic has brought about disruptions in healthcare for adults with intellectual and developmental disabilities. There is a need to explore ways to promote proactive healthcare and better prepare individuals for healthcare encounters. Methods: A co‐designed tool, the COVID Check‐in Tool, was introduced as part of a virtual health education programme to encourage proactive healthcare. Implementation of this Health Check‐in was evaluated with 36 adults with intellectual and developmental disabilities and 96 family caregivers who completed the programme using surveys, structured interviews and focus groups. Findings: Forty‐four percent of participants engaged in the Health Check‐in process, resulting in many reported benefits for those who participated. However, there were also barriers to initiating the Check‐in, along with challenges using the COVID Check‐in Tool, according to both the adults with disabilities who were interviewed and the family caregivers. Conclusions: The study underscores the importance of considering ways to integrate tools into routine healthcare practices, to facilitate improved healthcare delivery for people with intellectual and developmental disabilities during pandemic recovery efforts. As well, involving people with lived experience in the development and implementation of healthcare resources is critical. Accessible Summary: Our team worked together to make a tool that would help people with intellectual and developmental disabilities talk to their doctor about health problems after not seeing them a lot because of the pandemic. We called this tool the 'COVID Check‐in'.Then people from our team taught online health courses about how to use the COVID Check‐in Tool and other health topics.After the courses were over, we asked 36 adults with intellectual and developmental disabilities and 96 family caregivers if they had a Health Check‐in with their doctor and how it went, or what problems they had with it.Almost half of the people who took the courses had a Health Check‐in and most of the people thought it was helpful. Some people did not do it or did it but had problems with it.We end the paper with some ideas of how to make it easier to check in with the doctor and why it is important to include people with disabilities and family caregivers when making healthcare tools. [ABSTRACT FROM AUTHOR]

Parental substance misuse is a significant child welfare issue and associated with increased risk of child maltreatment. The aim of the present study was to understand what social care outcomes children who live with parental substance misuse have, and to assess factors associated with those social care outcomes over a two‐year period. The paper reports on a retrospective longitudinal study of 299 children all living with parental substance misuse and referred to one local authority in England. Data were collected from children's social work case files about procedural social care outcomes and factors which may be associated with those outcomes. Using cluster analysis, a new typology of children's longitudinal trajectories through the children's social care system was developed, consisting of five distinct types. Analysis indicated that some children received too little intervention from children's social care despite ongoing concerns, while other children were potentially unnecessarily caught up in the social care system. Factors associated with children having the poorest outcomes were: caregiver instability resulting from substance misuse, parenting capacity and household instability. The study's findings indicate that some children who live with parental substance misuse are at significant risk of harm, but others are not and may be better supported through non‐statutory services such as early help. [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]

Background: The contextual and interactive learning research was motivated by the need to enhance the healthcare training effect of caregivers of patients with suspected COVID‐19 infection during quarantine. However, there is a lack of effective approaches to integrating mobile contextual learning into interactive learning. Objectives: Therefore, this study developed a mobile augmented reality‐integration contextual interactive healthcare training system, and then investigated the effects of the proposed system on anxiety, learning effects, perceived support and self‐efficacies. Methods: To validate the effectiveness of the system, we conducted a quasi‐experiment with a sample of 91 caregivers of patients with suspected COVID‐19 infection. Results and conclusions: Results showed that the experimental group with the developed system was superior to the control group with e‐pamphlet instruction in mobile devices, in terms of learning effect, perceived support, self‐efficacies and reduction of anxiety during quarantine. Therefore, the mobile contextual interactive healthcare training system could be useful to improve caregivers' self‐efficacies as well as their ability to care for patients in the context of COVID‐19 infection prevention. Implications: This is one of the few studies of the effective approach for technology‐enhanced healthcare education in the COVID‐19 pandemic. Some corresponding suggestions are proposed: implementing mobile contextual interactive training activities to enhance caregivers' knowledge, skills and self‐efficacies; involving social interactions to relieve caregivers' anxiety; providing professional communications and support while facing difficulties in taking care of patients with suspected COVID‐19 infection. Lay Description: What is already known about this topic: The conventional printed materials or pamphlets on mobile devices are provided most in healthcare, with minimal interactions in the situation of the COVID‐19 Pandemic.Contextual interactive learning could contribute to the enhancement of caregivers' communication and self‐efficacy of learning, thereby reducing the patients' stress and anxiety, which compared with pamphlet‐based healthcare education.Previous studies have indicated that AR games have a beneficial impact on the physical activity and mental health of their players during the COVID‐19 pandemic, which helps them to decrease depression and anxiety. What this paper adds: A mobile AR‐integration contextual interactive healthcare training system is proposed to help caregivers with suspected COVID‐19 infection.The experimental results showed that the proposed system promoted the impact of the contextual interactive healthcare training on caregivers' anxiety, learning effects, perceived support and self‐efficacies. Implications of study findings for practitioners: The contextual interactive learning plays an important role in healthcare training. When the caregivers learn healthcare education content, more focus should be placed on the mobile AR‐integration contextual interactive healthcare training than conventional pamphlet‐based healthcare instructions.Relieving the anxiety of caregivers and avoiding them from infection is attainable with the use of AR‐integration contextual interactive healthcare training system.The proposed system of AR‐integration contextual interactive healthcare training could be extended to other healthcare aspects, such as the training of caregivers who provide care for ICU or infectious patients. [ABSTRACT FROM AUTHOR]

Limited research has been conducted in relation to social work and the impact upon kinship carers' own children in a UK context. This paper argues that pressure from government policy imperatives and organizational priorities creates tension and conflict in the professional self in the context of kinship care and with kinship carers' own children. It will examine the professional self through social work narratives utilising the two concepts economy of performance and ecology of practice. This paper focuses upon data from four focus groups and 16 semi-structured interviews carried out with 29 social workers within one local authority in the north of England. Transcripts were analysed using thematic analysis. Only data related to the professional self are examined. The discussion explores how social workers attempted to navigate the tension in their everyday practice. It illuminates the impact upon their performance in kinship care and implications for practice with carers' own children. The conclusion reveals the need for social workers to create a space within which kinship carers' own children's voices are heard. [ABSTRACT FROM AUTHOR]

Objective: To shorten the Patient Engagement In Research Scale (PEIRS) to its most essential items and evaluate its measurement properties for assessing the degree of patients' and family caregivers' meaningful engagement as partners in research projects. Methods: A prospective cross‐sectional web‐based survey in Canada and the USA, and also paper‐based in Canada. Participants were patients or family caregivers who had engaged in research projects within the last 3 years, were ≥17 years old, and communicated in English. Extensive psychometric analyses were conducted. Results: 119 participants: 99 from Canada, 74 female, 51 aged 17‐35 years and 50 aged 36‐65 years, 60 had post‐secondary education, and 74 were Caucasian/white. The original 37‐item PEIRS was shortened to 22 items (PEIRS‐22), mainly because of low inter‐item correlations. PEIRS‐22 had a single dominant construct that accounted for 55% of explained variance. Analysis of PEIRS‐22 scores revealed the following: (1) acceptable floor and ceiling effects (<15%), (2) internal consistency (ordinal alpha = 0.96), (3) structural validity by fit to a Rasch measurement model, (4) construct validity by moderate correlations with the Public and Patient Engagement Evaluation Tool, (5) good test‐retest reliability (ICC2,1 = 0.86) and (6) interpretability demonstrated by significant differences among PEIRS‐22 scores across three levels of global meaningful engagement in research. Conclusions: The shortened PEIRS is valid and reliable for assessing the degree of meaningful patient and family caregiver engagement in research. It enables standardized assessment of engagement in research across various contexts. Patient or public contribution: A researcher‐initiated collaboration, patient partners contributed from study conception to manuscript write‐up. [ABSTRACT FROM AUTHOR]

Background: Although advance care planning (ACP) for persons with dementia (PWD) can promote patient‐centered care by aligning future healthcare with patient values, few PWD have documented ACPs for reasons incompletely understood. The objective of this paper is to characterize the perceived value of, barriers to, and successful strategies for completing ACP for PWD as reported by frontline clinicians. Methods: Qualitative study using semi‐structured interviews (August 2018–December 2019) with clinicians (physicians, nurse practitioners, nurses, social workers) at 11 US health systems. Interviews asked clinicians about their approaches to ACP with PWDs, including how ACP was initiated, what was discussed, how carepartners were involved, how decision‐making was approached, and how decision‐making capacity was assessed. Results: Of 75 participating generalist and specialty clinicians from across the United States, 61% reported conducting ACP with PWD, of whom 19% conducted ACP as early as possible with PWD. Three themes emerged: value of early ACP preserves PWD's autonomy in cases of differing PWD carepartner values, acute medical crises, and clinician paternalism; barriers to ACP with PWD including the dynamic and subjective assessment of patient decision‐making capacity, inconsistent awareness of cognitive impairment by clinicians, and the need to balance patient and family carepartner involvement; and strategies to support ACP include clarifying clinicians' roles in ACP, standardizing clinicians' approach to PWD and their carepartners, and making time for ACP and decision‐making assessments that allow PWD and carepartner involvement regardless of the patients' capacity. Conclusions: Clinicians found early ACP for PWD valuable in promoting patient‐centered care among an at‐risk population. In sharing their perspectives on conducting ACP for PWD, clinicians described challenges that are amenable to changes in training, workflow, and material support for clinician time. Clinical practices need sustainable scheduling and financial support models. [ABSTRACT FROM AUTHOR]

Acute malnutrition affects not only the growth and development but also the body composition of children. However, its specific effects have not yet been characterized. This study aims to compare the body composition of 5–7‐year‐old children with moderate acute malnutrition (MAM) to that of their well‐nourished (WN) peers and identify associated factors. A school‐based comparative cross‐sectional study was conducted from June to July 2022 in Jimma town, southwest Ethiopia. The study participants were selected from eight kindergartens and eight primary schools using a simple random sampling technique based on the proportional allocation of the sample to the size of the population in the respective school. Descriptive statistics and multivariable linear regression analyses were used to assess the mean differences and associations between variables and isolate independent predictors of body composition, respectively. The statistical significance was determined using ß‐coefficients with 95% confidence intervals and a p value of ≤ 0.05. Data were captured from 388 (194 MAM and 194 WN) children with a response rate of 97.9%. The mean fat‐free mass of WN children was significantly higher compared with those with MAM (p < 0.001). The mean (SD) of fat mass of MAM children was 4.23 ± 0.72 kg, 4.36 ± 0.88 kg and 4.08 ± 0.89 kg for 5, 6 and 7‐year‐olds, respectively. For WN children, the mean (SD) of fat mass was 4.92 ± 0.88 kg for 5 years old, 5.64 ± 1.01 kg for 6 years old and 5.75 ± 1.26 kg for 7 years old (p < 0.001). On the multivariable linear regression analysis after controlling for background variables, WN children exhibited 1.51 times higher fat‐free mass compared with MAM children (β = 1.51, p = 0.003). A unit increase in age of the study participants was associated with a 1.37 increment in fat‐free mass (β = 1.37, p < 0.001). WN children had 1.07 times higher fat mass compared with children with MAM (β = 1.07, p < 0.001). A unit increase in the age of the child resulted in 0.15 times increment in fat mass (β = 0.15, p = 0.020), and being female was associated with a 0.37 increase in fat mass (β = 0.37, p < 0.001). The results showed that the mean fat mass and fat‐free mass were significantly lower among moderately acute malnourished children than in WN children showing the loss of both body compartments due to malnutrition. The body mass index for age, age of the child and sex of the child were significantly linked to both fat‐free mass and fat mass. Key messages: This study demonstrated that children aged 5–7 years suffering from moderate acute malnutrition (MAM) have lower mean body fat mass (FM) and fat‐free mass (FFM) as compared with well‐nourished (WN) children.The substantial difference observed between MAM and WN children in body FM and FFM calls for the integration of MAM treatment into the routine health services to prevent their sliding down to SAM and associated mortality. [ABSTRACT FROM AUTHOR]

To address high rates of malnutrition among children from vulnerable households in Rwanda, the government initiated a national food supplementation programme. A before and after evaluation, using repeat cross‐sectional surveys in randomly selected villages was conducted; aimed at assessing the effectiveness of providing fortified blended food (FBF) to children 18–23 months of age, pregnant and lactating women in the lowest tier of Rwanda's social support system. Data were collected in 2017, 2018 and 2021 through interviews with caregivers; anthropometric measurements and a capillary blood sample were obtained from children. The primary statistical analysis compared the nutritional status of children before and after the introduction of FBF. We enroled 724 children during each survey. The prevalence of stunting declined from 47% to 35% between 2017 and 2021; in 2018, the prevalence of stunting was 43%. Children had a 42% reduction in the odds of being stunted (adjusted odds ratio [AOR]: 0.58, 95% confidence interval [CI]: 0.47–0.74, p < 0.001) from 2017 to 2021 even after adjusting for inherent, distal, proximal, and intermediate covariates. The reduction in stunting observed within the first year of the programme was not statistically significant (AOR: 0.83, 95% CI: 0.67–1.03, p < 0.091). We observed meaningful reductions in the prevalence of stunting among children which coincided with the introduction of Government‐led initiative to reduce malnutrition. The Rwandan Government has committed to improving the living conditions of vulnerable households and has made strong investments in reducing malnutrition. The impact of these investments can be seen in the overall trend towards improved nutritional status highlighted in this evaluation. Key messages: The national distribution of fortified blended food (FBF) to pregnant and lactating women and 6‐ to 23‐month‐old children living in the most vulnerable households was associated with a meaningful reduction in stunted linear growth, iron deficiency and anaemia among young children after 5 years.This study indicates that stunted linear growth, in early childhood, can be reduced over 5 years when the government is committed to and invests in improving the living conditions of vulnerable households, including the national food supplementation programme.It was attainable to distribute FBF to vulnerable pregnant and lactating women and 6‐ to 23‐month‐old children, in a national programme, over the 5‐year evaluation period, including during the COVID‐19 pandemic. [ABSTRACT FROM AUTHOR]

Background: Healthcare and support workers play a pivotal role in delivering quality services and support to people seeking sanctuary who have experienced poor physical and mental health linked to previous trauma, relocation and loss of freedoms. However, they often encounter various challenges in their daily work, ranging from communication barriers to resource constraints. This qualitative study seeks to delve into the perspectives of healthcare and support workers' experience of workarounds, employed to overcome barriers to providing care. Aim: This study aims to describe healthcare providers', practitioners' and health and third sector support workers' views on barriers and workarounds to providing care for people seeking sanctuary, to inform policy and practice. Design: A qualitative study was carried out using semi‐structured telephone interviews. Setting: This study focused on primary, secondary, community and specialist National Health Service (NHS) support services for people seeking sanctuary in Wales, United Kingdom (2018). Method: We interviewed 32 healthcare providers, practitioners and support workers employed by primary care and third sector organisations. Our approach involved obtaining verbal informed consent before digitally recording and transcribing all interviews. To analyse the data, we used the Four Levels of Change for Improving Quality model as a guiding framework for interpretation. Results: Our study findings reveal that certain respondents expressed challenges in meeting the needs of people seeking sanctuary; notably, their experience of delivering care differed by care settings. Specifically, those involved in providing specialist NHS care believed that there was room for improvement. Mainstream primary, secondary and community health practitioners faced limitations due to resource constraints and lacked tailored information to address the unique circumstances and needs of sanctuary seekers. To address these gaps, workarounds emerged at both individual and local levels (team/departmental and organisational level). These included establishing informal communication channels between providers, fostering cross service collaboration to fill gaps and adapting existing services to enhance accessibility. Conclusion: Understanding healthcare providers', practitioners' and support workers' perspectives offers invaluable insights into ways to enhance healthcare delivery to sanctuary seekers. Acknowledging challenges and harnessing innovative workarounds can foster a more effective and compassionate service for this vulnerable population. Patient or Public Contribution: The HEAR study actively involved public contributors in the design, delivery and dissemination of the research. Two public contributors (S. M. and G. R.) who had personal experience of seeking asylum served as study co‐applicants. They played pivotal roles in shaping the research by participating in its development and securing funding. Alongside other co‐applicants, S. M. and G. R. formed the Research Management Group, overseeing study delivery. Their contributions extended to strategic decision‐making and specific feedback at critical junctures, including participant recruitment, data collection, analysis and reporting. Additionally, S. M. and G. R. were instrumental in recruiting and supporting a team of peer researchers, enhancing respondent participation among people seeking sanctuary. To facilitate effective public involvement, we provided named contacts for support (A. K. and R. F.), research training, honoraria, reimbursement of expenses and accessible information in line with best practice. [ABSTRACT FROM AUTHOR]

Policy makers in Sweden and other European Member States pay increasing attention as to how best support working carers; carers juggling providing unpaid family care for older family members while performing paid work. Exploring perceived benefits and challenges with web-based information and communication technologies as a means of supporting working carers' in their caregiving role, this paper draws on findings from a qualitative study. The study aimed to describe working carers' experiences of having access to the web-based family care support network 'A good place' ( AGP) provided by the municipality to support those caring for an older family member. Content analysis of interviews with nine working carers revealed three themes: A support hub, connections to peers, personnel and knowledge; Experiencing ICT support as relevant in changing life circumstances; and Upholding one's personal firewall. Findings indicate that the web-based family care support network AGP is an accessible, complementary means of support. Utilising support while balancing caregiving, work obligations and responsibilities was made easier with access to AGP; enabling working carers to access information, psychosocial support and learning opportunities. In particular, it provided channels for carers to share experiences with others, to be informed, and to gain insights into medical and care issues. This reinforced working carers' sense of competence, helping them meet caregiving demands and see positive aspects in their situation. Carers' low levels of digital skills and anxieties about using computer-based support were barriers to utilising web-based support and could lead to deprioritising of this support. However, to help carers overcome these barriers and to better match web-based support to working carers' preferences and situations, web-based support must be introduced in a timely manner and must more accurately meet each working carer's unique caregiving needs. [ABSTRACT FROM AUTHOR]

There are few short, validated tools to assess young children's obesity‐related dietary behaviours, limiting the rapid screening of dietary behaviours in research and practice‐based early obesity prevention. This study aimed to develop and assess the reliability and validity of a caregiver‐reported short dietary questionnaire to rapidly assess obesity‐related dietary behaviours in children aged 6 months to 5 years. The Early Prevention of Obesity in Childhood Dietary Questionnaire (EPOCH‐DQ) was developed using a rigorous process to determine content and structural validity. Three age‐appropriate versions were developed for (1) infants, aged 6–12 months, (2) toddlers, aged 1–2.9 years and (3) pre‐schoolers, aged 3–5 years. The questionnaire (7–15 items) measures dietary behaviours, including diet risk from non‐core food and beverage intake, diet quality from vegetable frequency, bread type and infant feeding practices. Test–retest reliability was assessed from repeated administrations 1 week apart (n = 126). Internal consistency, concurrent validity (against a comparison questionnaire, the InFANT Food Frequency Questionnaire), construct validity and interpretability were assessed (n = 209). Most scores were highly correlated and significantly associated (p < 0.05) for validity (rs: 0.45–0.89, percentage agreement 68%–100%) and reliability (intraclass correlation coefficient: 0.61–0.99) for diet risk, diet quality and feeding practice items. The EPOCH‐DQ shows acceptable validity and reliability for screening of obesity‐related behaviours of children under 5 years of age. The short length and, thus, low participant burden of the EPOCH‐DQ allows for potential applications in various settings. Future testing of the EPOCH‐DQ should evaluate culturally and socio‐economically diverse populations and establish the predictive validity and sensitivity to detect change. Key messages: Accurate measurement of obesity‐related dietary behaviours is essential for the evaluation of early obesity prevention programmes and monitoring population trends.The 7–15 item Early Prevention of Obesity in Childhood Dietary Questionnaire (EPOCH‐DQ) was shown to have acceptable validity and reliability for assessing obesity‐related behaviours of children aged 6 months to 5 years of age.The short length and thus low participant burden of the EPOCH‐DQ allows for potential applications in various settings, including research, population health monitoring and use by health professionals.Future testing of the EPOCH‐DQ should include evaluation across culturally and socio‐economically diverse populations and determine the predictive validity and sensitivity to detect change of the EPOCH‐DQ. [ABSTRACT FROM AUTHOR]

Household Risk Perception (HRP) and Self‐Efficacy in Environmental Risk Reduction (SEERR) instruments were developed for a public health nurse‐delivered intervention designed to reduce home‐based, environmental health risks among rural, low‐income families. The purpose of this study was to test both instruments in a second low‐income population that differed geographically and economically from the original sample. Participants (N = 199) were recruited from the Women, Infants, and Children (WIC) program. Paper and pencil surveys were collected at WIC sites by research‐trained student nurses. Exploratory principal components analysis (PCA) was conducted, and comparisons were made to the original PCA for the purpose of data reduction. Instruments showed satisfactory Cronbach alpha values for all components. HRP components were reduced from five to four, which explained 70% of variance. The components were labeled sensed risks, unseen risks, severity of risks, and knowledge. In contrast to the original testing, environmental tobacco smoke (ETS) items was not a separate component of the HRP. The SEERR analysis demonstrated four components explaining 71% of variance, with similar patterns of items as in the first study, including a component on ETS, but some differences in item location. Although low‐income populations constituted both samples, differences in demographics and risk exposures may have played a role in component and item locations. Findings provided justification for changing or reducing items, and for tailoring the instruments to population‐level risks and behaviors. Although analytic refinement will continue, both instruments advance the measurement of environmental health risk perception and self‐efficacy. © 2016 Wiley Periodicals, Inc. [ABSTRACT FROM AUTHOR]

Background and Aim: Domestic violence is a prevalent public health issue. While clinical guidelines and care programs for its identification and handling have been formulated in all administrative regions of Sweden, their degree of implementation is largely unknown. This study aims to assess the implementation of one administrative region's care program, including how it is seen to align with and function in clinical practice, and any perceived barriers to or facilitators of its use. Methods: A survey was distributed to first‐line managers for healthcare units with patient contact in the region (n = 807). The responses were analysed using descriptive statistics. Open responses were analysed thematically. Group interviews (n = 5) were held with caregivers (n = 15) working primarily with young patients and analysed thematically. Results: 73% of the survey respondents reported previous awareness of the care program, and 27% reported knowledge of its content. The extent to which their staff knew about and followed the care program was assessed to be relatively low. The survey response rate was 19%. Among interview participants, knowledge of the care program was generally quite low. Survey responses and interview discussions pointed to the importance of developing routines, of collegial and managerial support and of training on domestic violence and the care program. Conclusion: This study indicates that the knowledge and use of the regional care program is limited among healthcare staff, including among those working with young patients. This underscores the importance of information and training for furthering the implementation of clinical guidelines on domestic violence. [ABSTRACT FROM AUTHOR]

Sexual abuse and dating violence are chronic problems for children and young people in out‐of‐home care. This study explored the impact of a prevention and response programme Power to Kids, which targets harmful sexual behaviour (HSB), child sexual exploitation (CSE) and dating violence (DV) for children and young people in home‐based (foster) care. Twenty‐eight case managers, 25 foster carers and 13 children and young people participated in a mixed methods study in Victoria, Australia informed by the research question: How does the Power to Kids programme impact the sexual health and safety of children and young people in home‐based (foster) care? The data analysis revealed a SAFETY approach whereby the sexual health and safety knowledge of carers and case managers was enhanced, and carers were given permission to have Brave Conversations with children and young people, who could then apply the new knowledge to their lives. Case managers were upskilled in identifying indicators of sexual abuse and empowered to escalate stalled therapeutic and disruption practice when children and young people were identified as experiencing HSB, CSE or DV. [ABSTRACT FROM AUTHOR]

Introduction: Family carers play a crucial role in dementia care. As the condition progresses, people with dementia become increasingly dependent on their carers for all areas of daily living. The risk of carer burnout is significant. One of the more stressful events for family carers is when hospital admission is required for the person they care for. Living in regional Australia adds complexity to the experience. Hospital and health services in regional Australia could use a greater understanding of the issues associated with hospital care to inform patient and carer management, improve outcomes for this population and support the goal of 'ageing in place'. Objective: To explore the experience of carers of people with dementia in regional Australia when hospital care or treatment was required for the person they provide care for. Design: Six family carers living in regional Australia participated in this interpretative phenological study. Individual, semistructured interviews were held and transcribed verbatim shortly after. Data analysis occurred via three key processes: reading and highlighting, coding and grouping, which yielded the major themes and subthemes of the study. Findings: Three major themes and nine subthemes emerged from data analysis. The major themes were: (i) support and supply of specialist care; (ii) travel needs and negotiations; and (iii) empathy and experience make a difference. Discussion: Findings from this study highlight aspects of care that healthcare providers can address to improve outcomes for patients with dementia and their carers. Carers need opportunities to seek clarification and provide input on care plans. Good communication, involvement and relationship building between healthcare staff and carers are vital to achieving optimal patient outcomes. Staff training supporting understanding of appropriate dementia care is essential for improved patient and carer outcomes. Conclusion: Factors related to regional location, including lack of specialist care and support, compound carers' challenges. Healthcare provider education on dementia care and dementia‐friendly processes in hospitals will support optimal patient and carers outcomes. [ABSTRACT FROM AUTHOR]

Aim: To summarize the whole process management measures for caregivers of inpatients in a non‐new coronavirus pneumonia designated hospital in China during the novel coronavirus pneumonia epidemic. The implementation of these measures is mainly to prevent the virus pandemic caused by crowd gathering. Design: A quasi‐experimental study. Methods: Novel coronavirus pneumonia prevention and control measures were implemented in the 'pre‐hospital link, hospitalization link and discharge link' for the whole process of the hospitalized patients' caregivers. To evaluate the effects by time point inspection, the results were fed back using information technology for quality improvement. Results: The results of three time point inspections indicated that the management quality of many projects improved continuously (p < 0.05). From January to June of 2021, 20 departments implemented a facial recognition information management system. The ratio of patients/caregivers admitted was 1:0.528~1:0.965; It was found that it is effective to implement the whole process management measures. The facial recognition system plays a key role in the comprehensive management of the caregivers. [ABSTRACT FROM AUTHOR]

The aim of this study was to explore the lived experiences of grandparents raising their grandchildren with foetal alcohol spectrum disorder (FASD). Specifically, we sought to identify how caregivers make meaning of their experience, what challenges are faced by grandparents while raising a second generation and what positive experiences are encountered. Ten grandparents raising a child with FASD in Ontario, Canada, participated in semi‐structured interviews. Interpretative phenomenological analysis was used to analyse the interviews to determine reoccurring themes. Three main themes were identified: (i) challenges when raising a grandchild with FASD, including kinship adoption struggles and intergenerational issues; (ii) worries about the future, including financial planning and health concerns; and (iii) rewards, such as shifts in priorities and the opportunity to raise a second generation. Grandparents raising their grandchildren with FASD face challenges and thus require specific supports so that they may adequately provide a safe and nurturing home environment for children with often challenging learning and social needs. [ABSTRACT FROM AUTHOR]

Objectives To prioritize research topics relevant to the care of the growing population of older adults with multiple chronic conditions ( MCCs). Design Survey of experts in MCC practice, research, and policy. Topics were derived from white papers, funding announcements, or funded research projects relating to older adults with MCCs. Setting Survey conducted through the Health Care Systems Research Network ( HCSRN) and Claude D. Pepper Older Americans Independence Centers ( OAICs) Advancing Geriatrics Infrastructure and Network Growth Initiative, a joint endeavor of the HCSRN and OAICs. Participants Individuals affiliated with the HCSRN or OAICs and national MCC experts, including individuals affiliated with funding agencies having MCC-related grant portfolios. Measurements A 'top box' methodology was used, counting the number of respondents selecting the top response on a 5-point Likert scale and dividing by the total number of responses to calculate a top box percentage for each of 37 topics. Results The highest-ranked research topics relevant to the health and healthcare of older adults with MCCs were health-related quality of life in older adults with MCCs; development of assessment tools (to assess, e.g., symptom burden, quality of life, function); interactions between medications, disease processes, and health outcomes; disability; implementation of novel (and scalable) models of care; association between clusters of chronic conditions and clinical, financial, and social outcomes; role of caregivers; symptom burden; shared decision-making to enhance care planning; and tools to improve clinical decision-making. Conclusion Study findings serve to inform the development of a comprehensive research agenda to address the challenges relating to the care of this 'high-need, high-cost' population and the healthcare delivery systems responsible for serving it. [ABSTRACT FROM AUTHOR]

Introduction: Since 2018, four establishments in Quebec, Canada, have decided to implement the PAROLE‐Onco programme, which introduced accompanying patients (APs) in healthcare teams to improve the experience of cancer patients. APs are patient advisors who have had a cancer treatment experience and who conduct consultations to complement the service offered by providing emotional, informational and educational support to patients undergoing treatments (e.g., radiotherapy, chemotherapy, surgery), mostly for breast cancer. We aimed to explore the evolution of APs' perspectives regarding their activities within the clinical oncology teams as well as the perceived effects of their intervention with patients, the clinical team and themselves. Methods: A qualitative study based on semistructured interviews and focus groups was conducted with APs at the beginning of their intervention (T1) and 2 years afterwards (T2). The themes discussed were APs' activities and the perceived effects of their interventions on themselves, on the patients and on the clinical team. Results: In total, 20 APs were interviewed. In T2, APs' activities shifted from listening and sharing experiences to empowering patients by helping them become partners in their care and felt generally more integrated into the clinical team. APs help patients feel understood and supported, alleviate stress and become partners in the care they receive. They also alleviate the clinical team's workload by offering a complementary service through emotional support, which, according to them, helps patients feel calmer and more prepared for their appointments with healthcare professionals. They communicate additional information about their patients' health journey, which makes the appointment more efficient for healthcare professionals. When APs accompany patients, they feel as if they can make a difference in patients' lives. Their activities are perceived by some as an opportunity to give back but also as a way of giving meaning to their own experience, in turn serving as a learning experience. Conclusion: By mobilizing their experiential knowledge, APs provide emotional, informational, cognitive and navigational support, which allows patients to be more empowered in their care and which complements professionals' scientific knowledge, thereby helping to refine their sensitivity to the patients' experiences. Patient or Public Contribution: Two patient–researchers have contributed to the study design, the conduct of the study, the data analysis and interpretation, as well as in the preparation and writing of this manuscript. [ABSTRACT FROM AUTHOR]

Aims: To describe the home care experience, challenges and coping strategies of caregivers with children on automatic peritoneal dialysis (PD) in mainland China during the early stage of the COVID‐19 outbreak. Design: A qualitative descriptive approach was adopted. Semi‐structured telephone interviews were conducted among 14 families with children on automatic peritoneal dialysis from February 2nd to 10th, 2020. The care routine, stress and coping strategies of caregivers of children on peritoneal dialysis were collected. The data were analysed using thematic analysis. Methods: Four key themes were defined: (1) concerns about PD treatment intertwined with worries about COVID‐19; (2) retaining a sense of normality in the middle of the challenges; (3) staying safe; and (4) staying positive and carrying on. Results: Families with children on automatic PD addressed the stress from COVID‐19 and its containment measures by closely adhering to COVID‐19 preventative measures, actively adjusting mentality and maintaining a sense of normality during the outbreak. This implies that healthcare staff need to be more aware of the complex medical needs of families with children on automatic PD, advocate for them and facilitate their navigation through the repurposed healthcare system. [ABSTRACT FROM AUTHOR]

People with intellectual disabilities generally have poorer health outcomes compared with those who do not, including outcomes related to nutrition‐related non‐communicable diseases. Carers support people with intellectual disabilities in many aspects including habitual shopping and preparation of food, but their own nutrition knowledge and the influence this may have on dietary intakes of clients is unknown. We explored the nutrition knowledge of carers of people with intellectual disabilities in residential care settings, their dietary habits and their influence on clients' food shopping and preparation and therefore the diet consumed by their clients. Ninety‐seven carers belonging to a large independent care sector organisation specialising in the care of people with an intellectual disability completed a validated general nutrition knowledge and behaviour questionnaire. Seventeen carers from the residential care settings were interviewed to contextualise practice. Knowledge about key dietary recommendations scored highly. Carers who had more work experience were found to have higher scores in 'making everyday food choices' (p = 0.034). Daily consumption of fruit and vegetables (at least one portion per day) was observed (for fruit by 46% of the carers and for vegetables by 60% of the carers), whilst most carers reported avoiding consuming full‐fat dairy products, sugary foods and fried foods. The concept of a healthy diet; typical dietary habits of clients; role in food acquisition; and training in nutrition emerged as themes from the interviews. Carers discussed various topics including the importance of a balanced diet, cooking fresh foods and control of food portion sizes for clients relative to the care philosophy of a client‐centred approach, which encapsulates client autonomy. Gaps in knowledge around specific nutrients, making healthy choices and cooking skills remain. Carers have an influence on clients' dietary choices; they are able to provide healthy meals and share good dietary habits with clients. Further training in nutrition is recommended for impact on clients' health. [ABSTRACT FROM AUTHOR]

Background: End‐stage kidney disease (ESKD) patients require specific and continuous care, which affects caregivers' quality of life (QOL). It is necessary to define the basic problems and restrictions upon family caregivers of renal patients affecting their physical and psychological status. Objectives: The main objectives of this narrative review were to examine the literature over the past 10 years, to describe factors associated with QOL of caregivers of patients with ESKD, and to identify the level of subjective burden reported by caregivers. Methods: A literature search was carried out using the following electronic databases: PubMed, Medscape, Science Direct, Scopus, PsychINFO and other scientific sources. Keywords included 'quality of life', 'caregivers', 'end stage kidney or renal disease patients', 'burden' and a combination of these terms. Only studies from January 2010 to December 2020 were included in this study. Results: The results found that there was significant burden and distress experienced by caregivers that affected their QOL. Patients' QOL is associated with caregivers' QOL. The hours of caring per day and the long‐term replacement therapy are associated with great burden. Conclusions: More awareness to caregivers' QOL is required to meet their needs, reduce anxiety and to improve patients' QOL. Caregiver support could empower and prepare them for initiation of replacement therapy. This can potentially enhance their diseased family members' QOL and could also restrict the use of health care system resources. Given how difficult it is to conceptualize QOL, a holistic approach to patients and caregivers require QOL assessment in each stage of the kidney disease. [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]

Dietary diversity (DD) is a concern for poor people in developing countries, particularly in Africa. Most people's diets consist primarily of monotonous carbohydrate staples, with little or no animal products and few fresh fruits and vegetables. The aim of this intervention was to see how nutrition education delivered by trained health professionals improved preschool‐aged children's consumption of DD and animal‐sourced foods. The study used a quasi‐experimental design with 588 preschool‐aged children. Researchers used a multistage sample technique followed by a systematic random sampling technique. A χ2 test was used to determine the baseline differences in demographic and socioeconomic factors between the two groups, as well as the relationship between predictors and child DD and animal‐source foods (ASFs). The researchers used generalized estimating equations to assess the change in the difference in outcomes between the intervention and control groups, as well as the association between predictors and child DD and ASFs. The adjusted odds ratio with the corresponding 95% confidence intervals was reported to show the strength of the association. The findings of this study revealed that there was a highly significant difference in both DD scores (DDS) and ASFs between the control and intervention groups DDS (p < 0.003) and ASF (p < 0.001). According to the findings of this study, nutrition education can significantly improve DDS and ASF consumption among preschool‐aged children. Key messages: Promoting minimum dietary diversity in feeding practices is essential to improve child health and development on a global scale.Community‐based nutritional education, delivered by trained health professionals, improved feeding practices among caregivers.This nutrition education increased children's dietary diversity and consumption of animal‐derived foods significantly.Our findings highlight the need for future research to investigate relevant aspects not covered in this study. [ABSTRACT FROM AUTHOR]

Objective: This study examined older lesbian and gay adults' experiences regarding informal caregiving, including challenges and positive aspects of caregiving. Methods: Interviews were conducted with 16 lesbian women and gay men in Australia, aged 60+, who were engaged in informal caregiving. Analyses involved a qualitative thematic approach. Results: Most participants were caring for a friend or partner and regarded caregiving as a form of love and did not seek external support despite noting several impacts. Some participants found that they too were beginning to require care. For some, formal care was being considered, but with a degree of reluctance. Conclusions: Older lesbian and gay adult caregivers experience a range of challenges and support needs in relation to their experiences with the caregiving role. This research highlights a need for ensuring that caregiving policies and practices be responsive to the experiences and challenges faced by older lesbian and gay people. [ABSTRACT FROM AUTHOR]

Aim: The effects in cultural and health provisions can lead to different unmet support needs. Hope is seen as an important support, a supportive power, and an efficient coping strategy for cancer caregivers. The purpose of this study in Turkish society is to determine supportive care needs of caregivers of cancer patients, to determine the hope levels of those caring for cancer patients and foresee how variables and hope can trigger needs. Methods: To identify the unmet needs and hope levels of caregivers of advanced cancer patients in Turkish society. Data were collected using the Supportive Care Needs of Caregivers Scale and Herth Hope Index. Results: More than half of the advanced cancer caregivers (56.51%) reported unmet care needs. Their unmet needs and hope levels were above average. Regression analysis showed the total score for hope was related to health care and information needs, work‐social needs. Conclusion: Hope was related to health care and information needs and work‐social needs. Oncology nurses should focus on the unmet needs of caregivers, taking into account their cultural differences in order to raise their hopes. [ABSTRACT FROM AUTHOR]

Introduction: Many families now perform specialist medical procedures at home. Families need appropriate training and support to do this. The aim of this study was to evaluate a library of videos, coproduced with parents and healthcare professionals, to support and educate families caring for a child with a gastrostomy. Methods: A mixed‐methods online survey evaluating the videos was completed by 43 family carers who care for children with gastrostomies and 33 healthcare professionals (community‐based nurses [n = 16], paediatricians [n = 6], dieticians [n = 6], hospital‐based nurses [n = 4], paediatric surgeon [n = 1]) from the United Kingdom. Participants watched a sample of videos, rated statements on the videos and reflected on how the videos could be best used in practice. Results: Both family carers and healthcare professionals perceived the video library as a valuable resource for parents and strongly supported the use of videos in practice. All healthcare professionals and 98% (n = 42) of family carers agreed they would recommend the videos to other families. Family carers found the videos empowering and easy to follow and valued the mixture of healthcare professionals and families featured in the videos. Participants gave clear recommendations for how different video topics should fit within the existing patient pathway. Discussion: Families and healthcare professionals perceived the videos to be an extremely useful resource for parents, supporting them practically and emotionally. Similar coproduced educational materials are needed to support families who perform other medical procedures at home. Patient or Public Contribution: Two parent representatives attended the research meetings from conception of the project and were involved in the design, conduct and dissemination of the surveys. The videos themselves were coproduced with several different families. [ABSTRACT FROM AUTHOR]

COVID‐19 and its related policy measures have increased the psychological distress of individuals, including grandparent kinship caregivers. Guided by the Resilience Model of Family Stress, Adjustment, and Adaptation, this study examines relationships between material hardship, parenting stress, social support, resilience and psychological distress of grandparent kinship caregivers during the COVID‐19 pandemic, as well as the moderating role of kinship license status on these relationships. Kinship care licensing is a prerequisite to receiving financial assistance and other supporting services from the government. We administered a cross‐sectional survey of grandparent kinship caregivers (N = 362) in the United States. Logistic regression results indicated that material hardship was associated with higher odds of experiencing psychological distress, whereas resilience and social support were associated with lower odds. Kinship license status moderated the relationships of social support and resilience with psychological distress. Results suggest that additional emergency funds and more tailored financial services should be provided to meet material needs, and interventions with a focus on resilience and social support are particularly needed. The moderating effects of license status indicate that some interventions should be specifically implemented among licensed kinship caregivers, whereas parallel services should be provided to kinship caregivers regardless of their license status. [ABSTRACT FROM AUTHOR]

The effects of chronic cardiovascular disease can challenge the achievement of treatment goals and recovery outcomes. This study explores the ways in which patients cope with the effects of chronic cardiovascular disease, from the perspectives of patients, family caregivers, and health professionals. The qualitative study was conducted from May 2019 to September 2020 in Isfahan, Iran. Thirteen people with chronic cardiovascular disease, 6 family caregivers, and 16 healthcare professionals participated in semi‐structured individual interviews. Transcripts were analysed thematically. Findings suggest that people with chronic cardiovascular disease use a range of coping strategies, both positive and negative, to adjust to their conditions. The positive strategies include managing their health‐related symptoms, drawing on religious or spiritual beliefs, and accessing social and relational supports. Negative strategies can include over‐reliance on family members for support, leading to reduced activity and loss of independence. Understanding the nature of the strategies used by patients provides an important means by which health service providers can support patients to further develop positive coping strategies. This, in turn, will enable patients to achieve higher levels of wellbeing. [ABSTRACT FROM AUTHOR]

Background: Siblings often share in the care of parents with dementia, but little is known about how care is shared. Research suggests that in comparison with their brothers, sisters provide the majority of care to a parent with dementia and this can contribute to the sisters experiencing poorer health outcomes. There is limited knowledge about how to guide siblings who share in the care of a parent with dementia. Aim: Our qualitative descriptive study sought to explore the experiences of adult daughters sharing care responsibilities with their siblings. The study protocol was approved by institutional (University of Toronto and Baycrest Health Sciences) research ethics boards. Materials & methods: Thirty‐four daughters participated in an online qualitative survey. Data were analysed using Braun and Clarke's (Qualitative Research in Psychology, 3, 2006, 77) 6‐step process. Results: In an overarching theme, daughters expected shared caregiving with their siblings. They conceptualised this to be a practice of being equitable in dividing care responsibilities and fulfilling a supportive role for a parent with dementia; however, this expectation was not met by most daughters. Two subthemes were identified: (a) factors facilitating/constraining shared caregiving and (b) consequences of sharing care. The findings highlight the importance of understanding shared caregiving among siblings when caring for a parent with dementia. Discussion: Results from this study suggest that although shared caregiving is often the goal, factors such as gender roles, geographical proximity, caregiver expertise/skill set and work schedules affect caregivers' abilities to share caregiving. These factors affected whether daughters viewed the caregiving situation as being shared equitably or inequitably, and this led to feelings of acceptance or resentment of their sibling's contribution to the care of their parent. Conclusions: Healthcare providers can utilise these findings to better support adult–child caregivers negotiating care with their siblings. [ABSTRACT FROM AUTHOR]

Aims: Assessing pain in children with autism spectrum disorders (ASDs) can be extremely challenging, since many cannot self‐report pain. This study aims to test the validity of the Non‐Communicating Children's Pain Checklist – Revised (NCCPC‐R) in identifying pain in children and adolescents affected by ASDs. Materials and methods: A two‐phase validation study based on (a) the translation and cultural adaptation of the NCCPC‐R to Italian and to ASD‐specific needs and context; and (b) the validation of a modified, 32‐item version of the NCCPC‐R. In all, 141 carers of children aged 6–16 years with ASDs were asked to recall an in‐pain episode and a not‐in‐pain episode of their child and to rate on a 3‐point scale (0 = not at all, 3 = very often) each behaviour included in the tool. Internal consistency (Cronbach's α), explorative and confirmative factorial structure, as well as concurrent and discriminant validity, were all assessed. Results: Confirmatory factor analysis established the revised version of the NCCPC‐R for children with ASDs (named = NCCPC‐RASD), formed from 10 of the original 30 items categorised into three factors ('Changing in mood', 'Increasing in tension' and 'Alerting reaction') to have an acceptable level of reliability. The tool was internally consistent (α = 0.741 during in‐pain episodes, α = 0.790 during not‐in‐pain episodes) and was able to discriminate between in‐pain episodes (13.36 out of 40; CI 95% 12.34–14.39) and not‐in‐pain episodes (7.84 out of 40; CI 95% 6.86–8.82, p < 0.001). Conclusions: These results provide preliminary evidence that the 10‐item version of the NCCPC‐RASD is a reliable and valid tool for assessing pain in children with ASD. [ABSTRACT FROM AUTHOR]

Aim: To psychometrically test the Spanish version of the Caregiver Preparedness Scale (CPS) and document the preparedness level of caregivers. Design: A descriptive and validation study. Method: Purposive sampling method was used to select 171 family caregivers Spain. The scale was cross‐culturally adapted through a process that included translation, comparison with versions in other languages and back‐translation, review, pre‐testing and validity, and reliability tests. Results: The Spanish family caregivers are mainly female (79%) and married (75%). The Spanish version of the CPS presents changes with respect to the original. Confirmatory factor analysis supported the single‐factor model. Analysis of internal consistency yielded a Cronbach's α of 0.89. Significant correlations (p <.01) with other scales supported convergent validity. A descriptive analysis of the validated scale showed average levels of preparation (2.16 out of 4). Caregivers felt better prepared to attend to the patient's physical needs than emotional or spiritual needs. [ABSTRACT FROM AUTHOR]

Background: Dementia causes cognitive and memory difficulties which can reduce the driving safety of the individuals. The decision‐making process for driving retirement is challenging, and yet limited guidance is available. Objectives: This article reports the development of the Taiwanese version of dementia and driving decision aid (DDDA) and the evaluation from stakeholders through a dementia and driving education programme. Methods: A multi‐method approach was adopted using a pre‐test, post‐test survey and focus group interviews. A total of 154 healthcare professionals, family caregivers and people with dementia participated education programme, and 12 experts attended the focus group discussion. The survey included demographics, knowledge, confidence, competence and awareness of using DDDA. Participants completed a survey prior and immediately after the education programme. We translated a 32‐page interactive DDDA booklet from the original English version to Mandarin. The education programme consisted of three‐hour dementia and driving education module delivered both face‐to‐face and online. Results: The majority of participants described the booklet as balanced (91.7%) with the information presented in a 'good' or 'excellent' manner (93.4%). Most participants (85.3%) felt that DDDA helps them in making decisions about driving. Five themes were extracted from the focus group interview: (1) approach targeted to people with dementia, (2) specific content and additional information, (3) culturally appropriate modification, (4) having the right to drive and (5) booklet dissemination. The knowledge, confidence, competence and awareness of using the DDDA increased significantly (p < 0.001) after the education programmes. Conclusion: We anticipate that use of the DDDA booklet will raise awareness of this social and health issue among the general public and facilitate collaborations with clinicians, municipalities and related organisations in providing a decision‐making resource material for those with people living with dementia and their families. This study was not a clinical trial and the focus of this study was development and evaluation of the DDDA booklet. As mentioned in the methods section, participants were invited to attend the education program and provided their thoughts on the DDDA booklet based on their satisfaction level. Moreover, the education program was a one‐day, workshop type program. This study was neither "prospectively assigns human participants or groups of humans to one or more health‐related interventions" nor "to evaluate the effects on health outcomes", according to the definition of clinical trial by WHO. Therefore, we did not consider this study was a clinical trial. Implications for practice: There is an urgent need for supporting people with dementia and their families to negotiate the complex decision‐making involved in deciding to change their approach to driving. The DDDA booklet can fill an important gap in service delivery to people with dementia who are adjusting to life without driving. [ABSTRACT FROM AUTHOR]

BRAC, an international development organization, implemented a home‐fortification programme from 2014 to 2018 in Bangladesh. This study aimed to understand the unintended consequences of programmatic changes that occurred during the implementation of the programme on the prevalence of good infant and young child feeding (IYCF) practices and other associated factors. We used pooled data from eight cross‐sectional surveys and data from a series of qualitative investigations carried out as part of a mixed‐methods evaluation approach. A total of 6,479 caregivers of children aged 6 to 23 months participated in the surveys. The prevalence of good IYCF practices increased from baseline (42.1%) to midline (45.3%), but it decreased at the endline survey (31.9%). Qualitative investigations identified several reasons for low IYCF practices at the programme level, such as the withdrawal of community health worker (CHW) incentives for promoting IYCF, providing incentives for the home‐fortification of micronutrient powder (MNP) and changing the focus from IYCF promotion to MNP promotion. A multivariable generalized estimating equation model for pooled data revealed that caregivers were 28% (adjusted risk ratio [ARR]: 0.72, 95% CI [0.67, 0.78]) less likely to maintain good IYCF practices during the period when CHWs were not incentivized to promote IYCF compared to the period when CHWs were incentivized to promote it. The prevalence of good IYCF practices decreased from both baseline and midline to the endline survey due to the unintended consequences of the programmatic changes. An integrated intervention strategy to promote the home‐fortification of MNP and IYCF could be helpful to avoid unintended negative consequences of programmatic changes. [ABSTRACT FROM AUTHOR]

There has been little previous research regarding the effectiveness of ethics education interventions for residential care‐givers. The Researching Interventions to Promote Ethics in social care project responded to the question: Which is the most effective ethics education intervention for care‐givers in residential social care? A pragmatic cluster trial explored the impact of three ethics education interventions for: (a) interactive face‐to‐face ethics teaching; (b) reflective ethics discussion groups; and (c) an immersive simulation experience. There was also a control arm (d). 144 trial participants were recruited from 39 residential care homes for older people in southern England. Change scores compared across intervention arms showed a significant reduction in work‐related moral stress in the teaching arm compared with control group (p =.03); there were no significant differences between control and intervention arms in change scores for moral sensitivity, interpersonal reactivity (empathy) or ethical leadership. Qualitative data themes were as follows: ethical care; care challenges; and ethical care inhibitors. Overall findings stimulate reflection on the value of three different ethics education interventions and the most appropriate means to evaluate their impact. Findings suggest the complexity and diverse nature of ethical competence in care. We suggest a way forward for research evaluating ethics education. [ABSTRACT FROM AUTHOR]

Family caregivers exhibit a wide variety of needs and concerns while providing care to stroke survivors after discharge to the home setting. We report the results of two related studies utilizing a multimethod design in which stroke family caregivers (N = 12; N = 10) were interviewed using open‐ended questions, followed by written caregiver ratings regarding the types of telehealth technologies they preferred for the telephone assessment and skill‐building kit (TASK III). Qualitative data were analyzed using content analysis procedures with a provisional "start list" of codes in a matrix template based on the types of telehealth technologies in the rating forms. Descriptive statistics were used to analyze ratings with response scales ranging from 1 = strongly disagree to 5 = strongly agree. Average ratings for the telehealth technologies for the TASK III resource guide were obtained for the mailed hard copy binder (M = 3.58–4.13; SD = 0.35–1.00), an interactive website (https://www.task3web.com/; M = 3.86–4.17; SD =.72–1.07), an eBook (M = 3.17–3.67; SD = 0.84–1.17), and a USB drive (M = 3.75–4.00; SD =.82–.96). Average ratings for the telehealth technologies for the TASK III calls with the nurse were obtained for the use of a telephone (M = 4.36–5.00; SD = 0.00–0.89), FaceTime on an iOS device (e.g., iPhone or iPad; M = 3.73–4.40; SD = 0.79–0.98), or online videoconferencing (M = 3.17–3.50; SD = 0.82–1.47). Qualitative data revealed a wide variety of preferences for each type of telehealth technology, with advantages and disadvantages of each. The findings underscored the importance of offering multiple telehealth technology options to stroke family caregivers. Future studies are recommended that employ randomized control trial methodology to test theoretically‐based interventions that are based on stroke family caregiver preferences for telehealth technologies. [ABSTRACT FROM AUTHOR]

Background: The health of caregivers is as important as that of the elderly they care for. Although several studies have stressed the necessity and importance of reducing the care burden on formal caregivers and increasing the quality of their working lives, this issue has not been addressed both qualitatively and quantitatively from the caregivers' perspective. Aim: This study is a comprehensive assessment of the effects of formal caregivers' care burden on the quality of their working lives. Method: A convergent design of mixed methods was used. This study was conducted with 110 formal caregivers at an Elderly Care and Rehabilitation Center between 1 and 31 January 2019. Additional semi‐structured interviews were conducted with 10 of the respondents. Descriptive statistics were used for quantitative analysis and thematic statistics for qualitative analysis. The quantitative and qualitative data were merged and integrated for a mixed‐method analysis. Results: The relationship between the quality of working life and care burden was statistically significant for the formal caregivers. The results of the interviews supported this relationship. Four themes emerged from the interviews: the effects of caregiving on care staff, the effects of caregiving on caregivers' daily lives, the requirements for providing better care and caregivers' description of caregiving in a few words. Conclusion: Given that the care burden of formal caregivers affects the quality of their working lives, this burden should be assessed on a regular basis and efforts needed to be made to reduce it and improve the quality of their working lives. [ABSTRACT FROM AUTHOR]

Long‐term care for older people with dementia can adversely impact a family caregiver's life. A decrease in their quality of life may compromise the quality of care they provide to older people and their own quality of life. The samples include 76 family caregivers of older people with dementia in Thailand. Six questionnaires and the EuroQoL Five Dimensions Questionnaire were used in data collection. Descriptive and inferential statistics were used in data analysis. The findings revealed that quality of life of family caregivers was at a high level. Experiences of close relationships between care dyads and perceived social support were positively related to family caregiver's quality of life, whereas perceived stress and burden were negatively related. Perceived social support and experiences of close relationships might be predictors of family caregiver's quality of life. High quality of life levels among Thai family caregivers of older people with dementia were influenced by high perceived social support and high experiences of close relationships. An intervention focusing on modifying such predicting factors may effectively help maintain quality of life of these family caregivers. [ABSTRACT FROM AUTHOR]

Background: Best‐practice guidelines recommend that appropriate support be provided to public contributors to facilitate their involvement in research. One form of support is research awareness training. Older people with dementia and care partners were involved in four Research User Groups (RUGs) in the UK, France, Cyprus and Greece. We delivered research awareness training (RAT) to the RUGs. The aim of this study was to evaluate the acceptability and perceived outcomes of the training from the perspective of RUG members. Methods: At the end of each research training session, participants completed the Training Acceptability Rating Scale‐section 2, which records the respondent's impressions of the training process and the outcomes of training. Participants were also invited to take part in semi‐structured interviews at the end of the programme. Results: Thirty‐four RUG members completed the TARS‐section 2 with 23 completing semi‐structured interviews. Over two‐thirds (67%) of participants rated their overall satisfaction with the RAT 'a great deal'. Qualitative responses indicated that participants found group work to be beneficial for learning, the structure of training activities and topics covered appropriate. The type and format of the training materials were viewed as helpful, and they valued the new knowledge gained. Conclusions: The training contents were applicable, useful and relevant to the participants' role within the research. We highlight the importance of facilitating participation by (a) fostering awareness of relevant research issues and (b) tailoring delivery of training according to the needs of the participants. [ABSTRACT FROM AUTHOR]

Objective: To explore the perceived acceptability of the Volunteer Dementia and Delirium Care (VDDC)© program components from the perspective of key stakeholders in a metropolitan health network. Methods: A mixed‐methods design was used. Surveys (nurses) and focus groups and interviews (hospital staff, volunteers, patients and caregivers) were conducted simultaneously. Descriptive statistics were used to profile the survey responses. The framework method was used to analyse the qualitative data. Results: The majority of nurses identified that it is acceptable for volunteers to read to, and converse and play games with patients. Hospital staff perceived risk in volunteers assisting with feeding and mobilisation. Overall participants believed the VDDC was acceptable and would be of benefit to the patients. Conclusion: Key stakeholders have a favourable view of the VDDC© program. Strategies can be developed to address the identified issues, and components of the program may be amended to ensure that implementation is acceptable. [ABSTRACT FROM AUTHOR]

The caregiver–child interaction during mealtime, which refers to responsive feeding (RF), influences child's dietary intake. In Cambodia, given the level of malnutrition, getting better knowledge of RF among young children is essential, but to do so, using an appropriate assessment tool is necessary. We aim to develop and to validate a measurement tool to assess RF in two different situations (before and after an intervention) among children 6–23 months old. This research is part of a larger trial assessing the impact of nutrition education combined or not with the provision of complementary foods on child nutritional status. The "Opportunistic Observation Form" from the Process for the Promotion of Child Feeding package was used to collect data on RF through direct observations of child's meal episodes. Data were used to define an initial scale composed of four constructs and 15 indicators. Confirmatory factor analyses (CFA) and Hancock and Mueller's H reliability indices were computed to assess the validity and reliability of the scale. The final tool was applied to baseline and endline data. At baseline, the sample included 243 pairs and, at endline, 248 pairs. The final scale included two latent constructs (RF and active feeding) that comprise three indicators for active feeding and five for RF. Criteria for fit indices of CFA were met for both constructs though better at baseline. Reliability coefficients were above 0.80 for each construct at baseline and endline. This research proposes a scale that could be used to assess active feeding and RF. Further validation is warranted in different contexts. [ABSTRACT FROM AUTHOR]

With the increase in our older adult population, there is a need for dementia training for informal and formal dementia caregivers. The objective of this scoping study is to assess dementia knowledge instruments utilized in educational programs and interventions intended for formal and informal dementia caregivers. Scoping review methodology was used to search PubMed, PsycInfo, CINAHL and Web of Science with tailored database search terms. The search yielded 8101 results, with 35 studies meeting inclusion. Studies were conducted in eight countries, had varying study designs (randomized controlled trials [RCTs] = 9, non‐RCTs = 6, one‐group study design = 20) and utilized previously published (19) and author developed (16) instruments. Furthermore, the studies were internationally diverse, conducted in the United States (n = 18), Australia (n = 7), UK (n = 3), China (n = 2), Canada (n = 2), Taiwan (n = 1), Brazil (n = 1) and multi‐country (n = 1). Only two studies focused on minority populations. While author‐developed instruments may be more relevant and timesaving, studies should strive to validate instruments or use previously published instruments to help standardize findings across studies and understand better the effects of educational programs on caregiver knowledge. Geriatr Gerontol Int 2020; 20: 397–413. [ABSTRACT FROM AUTHOR]

Background: Childhood obesity is a global public health issue. Interventions to prevent the onset of obesity in the early years are often implemented in preschool settings. The ToyBox intervention was delivered across Europe and targeted energy balance‐related behaviours in preschools and children's homes through teacher‐led activities and parental education materials and was adapted for use in Scotland. This study assessed the acceptability of the 18‐week adapted intervention to both parents and teachers. Methods: Mixed methods were employed to collect both qualitative and quantitative data. Preschool staff and children's parents/caregivers completed post‐intervention feedback surveys, from which acceptability scores were calculated and presented as proportions. Focus groups were conducted with preschool staff, whereas parents/caregivers participated in semi‐structured interviews. A thematic analysis was applied to qualitative data following the development of a coding framework. Quantitative and qualitative data were analysed using SPSS and NVivo 10, respectively. Results: Preschool staff rated the intervention as highly acceptable based on post‐intervention feedback surveys (80%; mean score 8.8/11). Lower acceptability scores were observed for parents/caregivers (49%; 3.9/8). Nine preschool practitioners participated in focus groups (n = 3). User‐friendliness of the intervention materials, integration of the intervention with the curriculum, and flexibility of the intervention were identified as facilitators to delivery. Barriers to delivery were time, insufficient space, and conflicting policies within preschools with regard to changing classroom layouts. Parental interviews (n = 4) revealed a lack of time to be a major barrier, which prevented parents from participating in home‐based activities. Parents perceived the materials to be simple to understand and visually appealing. Conclusions: This study identified a number of barriers and facilitators to the delivery and evaluation of the ToyBox Scotland preschool obesity prevention programme, which should be considered before any further scale‐up of the intervention. [ABSTRACT FROM AUTHOR]

Background: Family members often need to be supported in informal care of the elderly and desire to be involved into care planning and decision‐making. Valid and reliable instruments are needed to measure how family members perceive the care and support they receive from nurses for older family members living at home. Aim: The purpose of this study was to translate the 20‐item social support scale of the Family Functioning, Family Health and Social Support (FAFHES) questionnaire from English to German and test the validity and reliability of the scale among Swiss‐German‐speaking family caregivers of home‐dwelling elderly people who receive home healthcare services. Methods: A cross‐sectional study was conducted to test the empirical and psychometric properties of the translated and culturally adapted version of the social support questionnaire. A factor analysis with the principal component analysis PCA was used to test construct validity. The internal consistency of items was measured with the Cronbach's alpha coefficient. Results: After a rigorous translation process the original 20‐item questionnaire was adapted into a 19‐item version and tested with family caregivers (n = 207) of home‐dwelling elderly. Psychometric testing of the German version of the social support questionnaire revealed that the three factors – affirmation, affect and concrete aid – were congruent with the original questionnaire. The accounted variance was 79.5% and the internal consistency determined by the Cronbach's alpha was 0.973. Conclusion: The German version of the social support scale of the FAFHES questionnaire is a valid and reliable instrument to assess family perceived support on three dimensions – affirmation, affect and concrete aid – received from nursing professionals. The questionnaire should be tested further in other German‐speaking populations. [ABSTRACT FROM AUTHOR]

Despite the predominant contemporary and traditional coping strategies adopted in Zimbabwe in the past three decades and beyond, challenges and issues related to inheritance continued to affect the livelihood of both orphans and vulnerable children (OVC) and their caregivers. This article is a qualitative phenomenological study seeking to examine the perceptions, views, and feelings of the OVC and their caregivers on their lived experiences in OVC care and support in Zimbabwe. The study focusses on the caregivers' perspectives of the impact of the inheritance experiences in OVC care and support within their tribal local rural communities. In‐depth narrative interviews were conducted with 30 caregivers, corroborated with 10 OVC purposively sampled in the Gutu District of Zimbabwe. The results showed that although the caregivers are doing their best in executing their strategies for OVC care and support, the manipulation and misappropriation of the inheritances from deceased parents or grandparents that were meant to benefit the OVCs are still widespread in the rural communities of Zimbabwe. In conclusion, the study recommends the need for an integrated stakeholders' approach in educating the local rural communities about their inheritance rights. [ABSTRACT FROM AUTHOR]

Background: A Dementia Health Literacy Project was undertaken in the north coast region of NSW, Australia, after it was identified as having a high prevalence of dementia. A Dementia Support Kit was produced with service user engagement to provide useful information to people with dementia and their families. Objective: To evaluate the Dementia Health Literacy Project using a realist evaluation framework. Setting and participants: The setting was the region of the north coast of New South Wales. Eight people diagnosed with dementia and their carers, 13 members of social groups of older people in the local area, and 22 local GPs and other health‐care and service providers participated in this study. Results: Two context‐mechanism‐outcome configurations were identified: (a) co‐design workshops where the stakeholders' opinions were equally valued (context) led service users to feel listened to and prompted them to provide feedback (mechanism) to develop a practical resource that they would use (outcome); and (b) use of health professionals to distribute the resources (context) that they consider useful and valuable (mechanism) resulted in the target audience receiving the resources (outcome). Discussion and conclusions: The Dementia Health Literacy Project produced a Dementia Support Kit that is likely to provide locally relevant and useful information for people with dementia and their carers. The results highlight the value of the co‐design approach in producing and disseminating dementia health literacy resources. Further evaluation is required to confirm the impact of the Kit over time on service users' behaviour and consequently on their health outcomes. [ABSTRACT FROM AUTHOR]

Children who have parents with any kind of illness may become young carers who take a responsibility not expected of children for household tasks, or personal or emotional care for parents and siblings. So far, little is known about children in Sweden who are at risk of becoming young carers. The aim of this article is therefore to explore the extent and impact of children's caring activities as reported in a pilot study by a sample of children in Sweden. A number of international questionnaires measuring the amount of caring activities, impact of caring, quality of life, and psychological well‐being were translated and combined into a survey. The pilot survey was completed by 30 children 10–18 years of age. Also, when completing the survey, the children were interviewed concerning their experiences of caregiving. The participants report on a group level emotional symptoms such as fear and nervousness above the clinical cut‐off value. They also rate a lower level of caring compared with findings from the United Kingdom, but they report a higher degree of negative impact of caring than young carers in the United Kingdom. [ABSTRACT FROM AUTHOR]

Stoma patients and their caregivers need to be autonomous in stoma care, but there are few instruments for measuring the level of self‐care. This study aims to develop and test the psychometric properties of the Ostomy Self‐Care Index (OSCI) and the Caregiver Contribution to Self‐Care in Ostomy Patient Index (CC‐OSCI), from a clinical, operative and psychosocial perspective. A multicentre validation study was conducted on a convenience sample of 468 ostomy patients and 227 caregivers. The signed informed consent forms were obtained before data collection. Tool validation was performed by testing content validity, construct validity, criterion and internal consistency. Two indexes were developed, building on the self‐care theory of chronic illness. For the OSCI, 32 items were developed and grouped into four 5‐point Likert scales: maintenance, monitoring, management and confidence. For the CC‐OSCI, 22 items were developed and grouped into three 5‐point Likert scales: maintenance, monitoring and management. The content validity indexes for the OSCI and CC‐OSCI were 95% and 93%, respectively. Exploratory factor analysis showed appropriate factor loadings (OSCI: min 0.395 to max 0.852; CC‐OSCI: min 0.442 to max 0.841). Criterion validity was established through significant correlation between levels of quality of life, complications, readmissions and self‐care in patients and caregivers. Strong internal consistency was found for the overall index, and within the scales (OSCI: α = 0.975; CC‐OSCI: α = 0.972). The OSCI and CC‐OSCI are valid and reliable indexes. Further studies specifically aimed at predicting the level of self‐care are especially recommended. [ABSTRACT FROM AUTHOR]