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Transition services—programs that support adolescents and young adults (AYAs) as they move from a child‐centered to a more autonomous, adult‐orientated healthcare system—have been associated with improved short‐ and long‐term healthcare outcomes. Unfortunately, there is a paucity of evidence exploring transition services within the neurogastroenterology and motility (NGM) field. The overall aim of this article, endorsed by the American Neurogastroenterology and Motility Society and European Society of Neurogastroenterology and Motility, is to promote a discussion about the role of transition services for patients with NGM disorders. The AYAs addressed herein are those who have: (a) a ROME positive disorder of gut–brain interaction (DGBI), (b) a primary or secondary motility disorder (including those with motility disorders that have been surgically managed), or (c) an artificial feeding requirement (parenteral or enteral tube feeding) to manage malnutrition secondary to categories (a) or (b). The issues explored in this position paper include the specific physical and psychological healthcare needs of patients with NGM disorders; key healthcare professionals who should form part of a secondary care NGM transition service; the triadic relationship between healthcare professionals, caregivers, and patients; approaches to selecting patients who may benefit most from transition care; methods to assess transition readiness; and strategies with which to facilitate transfer of care between healthcare professionals. Key areas for future research are also addressed, including the construction of NGM‐specific transition readiness questionnaires, tools to assess post‐transfer healthcare outcomes, and educational programs to train healthcare professionals about transition care in NGM. [ABSTRACT FROM AUTHOR]

Federal authorities banned nursing home visitation in the early days of the coronavirus disease 2019 (COVID-19) pandemic. However, there was growing concern that physical isolation may have unintended harms on nursing home residents. Thus, nursing homes and policymakers faced a tradeoff between minimizing COVID-19 outbreaks and limiting the unintended harms. Between June 2020 and January 2021, 17 states implemented Essential Caregiver policies (ECPs) allowing nursing home visitation by designated family members or friends under controlled circumstances. Using the Nursing Home COVID-19 Public File and other relevant data, we analyze the effects of ECPs on deaths among nursing home residents. We exploit variation in the existence of ECPs across states and over time, finding that these policies effectively reduce both non-COVID-19 and COVID-19 deaths, resulting in a decrease in total deaths. These effects are larger for states that implemented policies mandatorily or without restrictions, indicating a dose-response relationship. These policies reduce non-COVID-19 deaths in facilities with higher quality or staffing levels, while reducing COVID-19 deaths in facilities with lower quality or staffing levels. Our findings support the use and expansion of ECPs to balance resident safety and the need for social interaction and informal care during future pandemics., (© 2024 The Author(s). Health Economics published by John Wiley & Sons Ltd.)

Purpose: The provision and funding of long-term care (LTC) for older people varies between European countries. Despite differences, there is limited information about the comparative performance of LTC systems in Europe. In this study, we compared quality of life (QoL) of informal carers of home care service users in Austria, England and Finland., Methods: Informal carers were surveyed in Austria, England and Finland. The study data (n = 835) contained information on social care-related quality of life (SCRQoL) associated with the ASCOT-Carer measure, and characteristics of carers and care recipients from each country. We applied risk-adjustment methods using a fractional regression model to produce risk-adjusted SCRQoL scores for the comparative analysis. In a sensitivity analysis, we applied multiple imputation to missing data to validate our findings., Results: We found that the mean values of the risk-adjusted SCRQoL of informal carers in England were 1.4-2.9% and 0.3-0.5% higher than in Finland and Austria, and the mean values of the risk-adjusted SCRQoL of carers in Austria were 0.8-2.7% higher than in Finland. Differences in the mean values of the country-specific risk-adjusted SCRQoL scores were small and statistically non-significant. English informal carers were less healthy and co-resided with care resipients more often than carers in Austria or Finland., Conclusion: Small differences between the risk-adjusted SCRQoL scores between Austria, England and Finland are consistent with the observation that the countries provide different types of support for informal carers. Our results help local and national decision-makers in these countries to benchmark their informal care support systems., (© 2024. The Author(s).)

Since the end of the Second World War in 1945, the erection of camps within and across state borders has become the most common response to the influx of displaced persons. Based on empirical evidence from northern Uganda, this paper aims to provide answers to two main questions: (i) how does the camp influence and frame the upbringing of children?; and (ii) how do caregivers shape and adjust upbringing within this setting and when they return to their 'former homes' ? Interviews and focus-group discussions were conducted with 48 caregivers living in Kitgum District, northern Uganda. Deductive thematic analysis was employed to structure participants' accounts of past and present interconnections between upbringing and (previous) encampment. By paying close attention to their (counter-)narratives, people's agency and coping are emphasised through the simultaneous forging of new interconnections (that is, discontinuities) and holding on to old interconnections (that is, continuities) between upbringing, the camp, and the post-war village., (© 2024 ODI.)

Fully elucidating the burden that Lennox-Gastaut syndrome (LGS) places on individuals with the disease and their caregivers is critical to improving outcomes and quality of life (QoL). This systematic literature review evaluated the global burden of illness of LGS, including clinical symptom burden, care requirements, QoL, comorbidities, caregiver burden, economic burden, and treatment burden (PROSPERO ID: CRD42022317413). MEDLINE, Embase, and the Cochrane Library were searched for articles that met predetermined criteria. After screening 1442 deduplicated articles and supplementary manual searches, 113 articles were included for review. A high clinical symptom burden of LGS was identified, with high seizure frequency and nonseizure symptoms (including developmental delay and intellectual disability) leading to low QoL and substantial care requirements for individuals with LGS, with the latter including daily function assistance for mobility, eating, and toileting. Multiple comorbidities were identified, with intellectual disorders having the highest prevalence. Although based on few studies, a high caregiver burden was also identified, which was associated with physical problems (including fatigue and sleep disturbances), social isolation, poor mental health, and financial difficulties. Most economic analyses focused on the high direct costs of LGS, which arose predominantly from medically treated seizure events, inpatient costs, and medication requirements. Pharmacoresistance was common, and many individuals required polytherapy and treatment changes over time. Few studies focused on the humanistic burden. Quality concerns were noted for sample representativeness, disease and outcome measures, and reporting clarity. In summary, a high burden of LGS on individuals, caregivers, and health care systems was identified, which may be alleviated by reducing the clinical symptom burden. These findings highlight the need for a greater understanding of and better definitions for the broad spectrum of LGS symptoms and development of treatments to alleviate nonseizure symptoms., (© 2024 The Authors. Epilepsia published by Wiley Periodicals LLC on behalf of International League Against Epilepsy.)

Aim: To identify, describe and synthesise what is known about family carers' experiences and perspectives of engagement in delirium prevention and care for adults in hospital., Design: Systematic review and synthesis of qualitative evidence., Data Sources: Comprehensive literature search within PubMed, CINAHL, EMBASE, Scopus, Cochrane Central and PsycInfo databases to August 2022. Peer reviewed original qualitative research published in English., Methods: Data were extracted using Covidence systematic review software. Methodological quality was reviewed against the Critical Appraisal Skills Program (CASP) Qualitative Checklist. Thematic synthesis was used to develop analytical themes. Confidence in the Evidence from Reviews of Qualitative Research (GRADE-CERQual) framework was applied to findings., Results: Of 3429 records identified, 29 met criteria for final inclusion. Studies included a range of settings (intensive care, medical and surgical wards) and family carer types (spouse, daughter, parent and friend). Three primary themes Shared Caregiving, Partnership and Support, Communication for Shared Understanding and three cross-cutting contextual themes Care Transitions, Family Carer Context and Hospital Context were identified. Family carers have mixed experiences of involvement in delirium care and prevention. Family carer engagement in care impacted perceptions of care quality and their own self-efficacy. Where person-centred care expectations were not met, some family carers adopted compensatory or care contingency strategies. Information sharing and timely support from hospital staff who understood the carer context supported carer involvement. Supportive physical environments and addressing power imbalances allowed greater engagement., Conclusion: Family carers often wish to be involved in delirium prevention and care, but need to be recognised as individuals, listened to, informed and supported to optimise their contribution., Impact: The review findings can guide health professional and decision makers to optimise family carer involvement in delirium care programs., Protocol Registration: PROSPERO [CRD42020221854]., Reporting: ENTREQ. No Patient or Public Contribution., (© 2024 The Authors. Journal of Clinical Nursing published by John Wiley & Sons Ltd.)

Background: Omission of family and caregiver health spillovers from the economic evaluation of healthcare interventions remains common practice. When reported, a high degree of methodological inconsistency in incorporating spillovers has been observed., Aim: To promote emerging good practice, this paper from the Spillovers in Health Economic Evaluation and Research (SHEER) task force aims to provide guidance on the incorporation of family and caregiver health spillovers in cost-effectiveness and cost-utility analysis. SHEER also seeks to inform the basis for a spillover research agenda and future practice., Methods: A modified nominal group technique was used to reach consensus on a set of recommendations, representative of the views of participating subject-matter experts. Through the structured discussions of the group, as well as on the basis of evidence identified during a review process, recommendations were proposed and voted upon, with voting being held over two rounds., Results: This report describes 11 consensus recommendations for emerging good practice. SHEER advocates for the incorporation of health spillovers into analyses conducted from a healthcare/health payer perspective, and more generally inclusive perspectives such as a societal perspective. Where possible, spillovers related to displaced/foregone activities should be considered, as should the distributional consequences of inclusion. Time horizons ought to be sufficient to capture all relevant impacts. Currently, the collection of primary spillover data is preferred and clear justification should be provided when using secondary data. Transparency and consistency when reporting on the incorporation of health spillovers are crucial. In addition, given that the evidence base relating to health spillovers remains limited and requires much development, 12 avenues for future research are proposed., Conclusions: Consideration of health spillovers in economic evaluations has been called for by researchers and policymakers alike. Accordingly, it is hoped that the consensus recommendations of SHEER will motivate more widespread incorporation of health spillovers into analyses. The developing nature of spillover research necessitates that this guidance be viewed as an initial roadmap, rather than a strict checklist. Moreover, there is a need for balance between consistency in approach, where valuable in a decision making context, and variation in application, to reflect differing decision maker perspectives and to support innovation., (© 2023. The Author(s).)

Background: The increasing frailty of home-dwelling older people can lead to rising expectations from their family caregivers due to various demographic developments and political guidelines. European data show that 60% of home-dwelling older people receive informal care. Frailty among older people is a state of vulnerability, increasing the risk of adverse health outcomes, declining daily activities and needing long-term care., Aim: To explore family caregivers' lived experiences with caring for frail, home-dwelling older people., Methods: We conducted a phenomenological study to obtain in-depth descriptions of the phenomenon. We interviewed nine family caregivers, five men and four women between 52 and 90 years old, in-depth in their homes. We used a hermeneutical phenomenological approach described by van Manen and followed the COREQ checklist., Results: The phenomenon's essential meaning is described as striving to adapt throughout the caring relationship. The interrelated themes describe different caring relationships, caring for a family member and letting go of the primary caring responsibility., Conclusions: Family caregivers describe care as meaningful yet demanding. In our study, the varying condition of frailty was an additional challenge in care. By addressing these challenges, healthcare providers can better support and help family caregivers to withstand their caring relationships. The Norwegian Centre for Research Data approved the study (Ref.61202)., (© 2023 The Authors. International Journal of Older People Nursing published by John Wiley & Sons Ltd.)

Background: Child survival remains a major public health challenge in the sub-Saharan region of Africa, especially Nigeria. The Boko Haram crisis, which has aggravated this, has led to the displacement of many people in the north-eastern region, including children under five. This study investigated the determinants of child survival practice among caregivers in internally displaced persons' (IDP) camps in Abuja Municipal Area Council (AMAC), Nigeria., Methodology: A cross-sectional design was used to collect data on determinants of child survival practice from 312 caregivers in five purposively selected IDP camps in AMAC using the snowball sampling technique. Data were analysed using univariate, bivariate, and multivariate statistics at 5% level of significance., Results: The mean age of respondents was 29.6 ± 6.72 years. There was a significant (p < 0.05) relationship between the predisposing, reinforcing, enabling and environmental factors studied and child survival practice. Findings also indicated that all factors were significant (p < 0.05) predictors of child survival practice with the reinforcing factor being the major predictor (ß = 0.38; t = 6.08)., Conclusion: Attention needs to be paid to all factors, particularly the reinforcing factor of social support in order to promote optimal child survival practice among caregivers in AMAC IDP camps. Collaboration with social work professionals would be an added benefit to enhance social support., (© 2023 John Wiley & Sons Ltd.)

The 2023 edition of the AIxIA Conference, held in Rome, brought together a large number of researchers and practitioners to discuss the most recent and important advancements in Artificial Intelligence (AI). The conference featured 19 workshops, organized by 77 experts, attracting 248 submissions and resulting in 16 proceedings. This special issue presents extended versions of selected papers initially showcased at these workshops. Each paper underwent rigorous review and represents a diverse array of topics, reflecting the multifaceted nature of the Italian AI community. The topics covered include ethical foundations to symbiotic AI, symbolic knowledge extraction from black-box models, creative influence prediction using graph theory, AI approaches to multidimensional poverty prediction, an assessment of AI-based supports for informal caregivers, deep learning-based EEG denoising, AI-assisted board-game-based learning, large language models for assessment and feedback in higher education, geometric reasoning in the Traveling Salesperson Problem, defeasible reasoning in weighted knowledge bases, and conditional computation in neural networks. These contributions demonstrate the innovative and interdisciplinary research within the AI community, offering valuable insights and advancing the field. [ABSTRACT FROM AUTHOR]

Background: Many children and young people in England provide support to family members who are disabled, have mental or physical ill health, or misuse drugs or alcohol. Providing care can negatively impact children and young people's education, employment, health and social participation, with associated costs. Support is needed to prevent and reduce these negative impacts. The study sought to provide new knowledge and address prior research gaps regarding how best to support young carers from their perspective and that of the people they care for., Objectives: To address the following questions: What types, components or features of services and other support are seen as helpful, valued, and acceptable to young people who look after someone at home and the people they support? Conversely, what is found to be less or unhelpful? What additional support is perceived as needed? What are the barriers experienced by young and young adult carers in seeking and accessing services for themselves or the person they support? What are the barriers and facilitators for practitioners in providing support and services perceived as valued, helpful and needed by young and young adult carers and the people they support?, Design and Setting: In-depth qualitative methodology using focus groups, in-depth semistructured interviews and workshops in four localities in England., Participants: One hundred and thirty-three carers aged 9-25 years with a range of caring and life circumstances and sociodemographic characteristics. Seventeen adult care recipients (parents) with a range of physical and/or mental healthcare and support needs. Nineteen practitioners from schools, colleges, young carers organisations, voluntary sector services, mental health services, the National Health Service, adult social care and local authority adult and children's social care commissioners., Results: The types and aspects of support that young carers and their families need, and value when received, include: support that reduces or removes their practical and emotional caring responsibilities; support to mitigate the negative impacts of care and help with other life issues; information and advice about services and wider resources and support; someone trusted available to talk to; greater awareness, recognition and understanding; and choice, flexibility, and co-development of plans and solutions. We found a great deal of unmet need for support, and variation in type and quality of support received, including geographically., Limitations: Potential limitations are that we were not able to engage with, or recruit, young carers from some intended subgroups, meaning some perspectives are missing. Partly because of COVID-19 measures during the study, we mainly recruited through young carers organisations and their family projects, although this was balanced by recruitment through schools and extensive outreach and engagement by the collaborating organisations prior to the project starting., Conclusions: Action is now needed to consistently and sustainably implement the types of support that young carers and the people they care for say they need and value., Future Work: Future work should include more research from the perspectives of young carers and the people they care for, especially from particularly marginalised groups; and research to understand what works and how to improve implementation of the support needed and valued., Study Registration: This study is registered as Current Controlled Trials ISRCTN13478876. https://doi.org/10.1186/ISRCTN13478876., Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR129645) and is published in full in Health and Social Care Delivery Research ; Vol. 12, No. 36. See the NIHR Funding and Awards website for further award information.

Aim: To map existing evidence and identify gaps in the literature concerning psychosocial impacts of being nil by mouth (NBM) as an adult., Design: A scoping review of the literature was undertaken using JBI guidance. A protocol was registered on the Open Science Framework (osf.io/43g9y). Reporting was guided by Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for Scoping Reviews (PRISMA-ScR)., Methods: A comprehensive search of six databases (CINAHL, Embase, MEDLINE, PsycINFO, SCOPUS and Web of Science) was performed for studies published up to February 2023, with no restriction to study type. A scope of the grey literature was also undertaken. Two authors independently assessed eligibility and extracted data. Descriptive statistical analysis and narrative synthesis were used, and patient and public involvement included in funding discussions., Results: A total of 23 papers were included in the review, consisting of 14 primary studies (7 qualitative and 7 quantitative) and 9 grey literature. Both global psychological distress and distress specific to being NBM (thirst, missing food and drink) were reported. Caregivers also experience distress from their family member being NBM. Furthermore, social impacts were reported for both patient and caregiver, primarily social isolation and subsequent low mood., Conclusion: Furthermore, research is needed to understand the prevalence of this population, how best to measure psychosocial impacts and to explore whether (and how) psychosocial impacts change over time. Advancement in this area would enable better service development to optimize care for this patient group. WHAT IS KNOWN ABOUT THIS TOPIC?: Eating and drinking provides more than nutrition and hydration. A wide range of conditions can lead to recommendations for no longer eating and drinking (nil by mouth). Being nil by mouth (NBM) for short periods such as pre-operative fasting causes distress; however, little is understood about impact on longer-term abstinence from eating and drinking. WHAT THIS PAPER ADDS?: Psychosocial consequences of being nil by mouth (NBM)have been investigated by both quantitative and qualitative studies. Being NBM impacts both patients and caregivers in various psychosocial aspects, including distress and social isolation. Several gaps remain, however, regarding ways to measure psychosocial impact of being NBM., (© 2024 The Authors. Journal of Advanced Nursing published by John Wiley & Sons Ltd.)

Background: Informal caregivers are an essential part of health and social care systems worldwide. As such, they may need professional support., Aim: The aim of this study was to describe informal caregivers' experiences and need for support from a tailored primary health care (PHC) unit., Methods: This is a qualitative descriptive study using data collected from five semi-structured focus group discussions with a purposeful sample of 16 informal caregivers of older relatives. Respondents were recruited from a tailored PHC unit for people aged 75 years or older in a region in central Sweden. The data were analysed by qualitative content analysis with an abductive approach, based on the principles of the patient- and family-centred care framework., Results: The overarching theme was 'Striving for partnership'. The findings indicate that informal caregivers to some extent felt supported by the healthcare professionals. However, the caregivers expressed a need to be further acknowledged by the professionals in order to participate in the care of their older relatives in the way they wanted. Moreover, insufficient information regarding the older adult's health condition and care provided by the professionals had a negative impact on the caregiver's participation in care., Conclusions: Informal caregivers have unmet needs for support and strive for a partnership with the PHC professionals. PHC professionals should be more attentive and invite informal caregivers to participate in the care of the older adult in order to meet their support needs and build an equal partnership. The patient- and family-centred care framework may be of guidance when providing care for older adults in a PHC context., (© 2024 The Authors. Scandinavian Journal of Caring Sciences published by John Wiley & Sons Ltd on behalf of Nordic College of Caring Science.)

Background: India has a significant prevalence of people with intellectual disabilities. Despite their higher prevalence, they receive poor support. Therefore, this review aims to explore the experiences of family carers in providing care for children with intellectual disabilities in India., Methods: A qualitative evidence synthesis was undertaken, searching databases such as MEDLINE, CINAHL, Web of Science, and PsycInfo up to October 2023. Grey literature was also searched for unpublished studies, with two reviewers assessing methodological quality. Eleven eligible studies, mostly qualitative in design, were included in the review. The data synthesis followed a thematic approach., Results: The synthesis found five themes representing family carers' experiences and perspectives. These were 'resilience and acceptance', 'parental response', 'care dynamic', 'preparing for transition to adulthood' and 'parental advocacy'., Conclusion: Family carers hold diverse views, while almost all consider providing care complex and challenging, with few positive experiences., (© 2024 The Author(s). Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

The effective treatment in the early stages of schizophrenia is of critical importance to improve the prognosis. Schizophrenia affects patients' relatives too. The effects of early or late initiation of long-acting injectable antipsychotics (LAI-APs) on the patient have been shown, yet their effects on the caregiver are still unknown. We aimed to determine how the time of initiation of LAI-APs affects the caregiver burden by comparing the patients who were started on LAI-APs in the first 5 years of diagnosis and those who were started at a later period. Patients were classified as 'early-LAI' and 'late-LAI' according to the time of initiation of a LAI-AP. Their caregivers were also classified as the same way, as 'caregiver-early' and 'caregiver-late' and were compared in terms of caregiver burden. The quality of life, depression, anxiety, and caregiver burden scores of the caregiver-late group were significantly worse. The time of initiation of LAI-APs and the functioning levels of the patients were found to be determinant factors for the caregiver burden. This is the first study to investigate the effects of LAI-AP's initiation time on the caregivers to our knowledge. The use of LAI-APs in the early stages is associated with better outcomes for the caregiver., (Copyright © 2023 Wolters Kluwer Health, Inc. All rights reserved.)

Children on home invasive mechanical ventilation necessitate specialized equipment, continuous monitoring, and multidisciplinary care. Transitioning these children from hospital to home care is complex, demanding careful planning. Guidelines and observational studies emphasize the importance of a standardized, comprehensive, and staged educational approach for caregiver education in discharge planning, yet program variations persist, lacking standardized checklists. This review aims to offer insights into crucial factors for a successful transition from hospital to home care for children using home-invasive mechanical ventilation while also developing comprehensive caregiver checklists to ensure high-quality care, taking into account families' socioeconomic status., (© 2023 Wiley Periodicals LLC.)

Providing care to a patient with cerebral palsy can have many negative impacts upon caregivers. This study was carried out to define caregiving burden in the caregivers of cerebral palsy patients and determine the relationships between religious coping, fatalism, and burden of care. This cross-sectional and correlational study included 132 caregivers. Data were obtained using the Religious Coping Scale, the Fatalism Scale, and the Caregiver Burden Scale. It was determined that 18.9% of the participants experienced a heavy care burden. The luck and pessimism dimensions of the Fatalism Scale were positively and weakly correlated with caregiving burden (p < 0.01), while there was no correlation between caregiving burden and positive or negative religious coping styles (p > 0.05). Perception of fatalism explained 10% of the total variance in caregiving burden (R = 0.329, R 2  = 0.109, F = 5.195, p = 0.002). It is recommended that caregivers be supported by religious experts to strengthen positive religious coping styles and advisable fatalism perceptions., (© 2023. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Objectives: To explore the profiles of psychological flexibility among dementia family caregivers and examine their associations with psychological well-being and caregiving factors., Methods: Participants were 521 dementia family caregivers in Japan. Latent profile analysis was conducted to explore the profiles of psychological flexibility. The analyses examined differences in depression, anxiety, life satisfaction, and work-family conflict/enrichment between the profiles, and whether sociodemographic variables and caregiving stressors predict the profile., Results: Four distinct profiles were identified: high psychological flexibility (14.2%), moderate psychological flexibility with high commitment (24.7%), moderate psychological flexibility with low commitment (48.0%), and low psychological flexibility (13.1%). The low psychological flexibility profile exhibited the highest scores of depression, anxiety and work-family conflict, followed by the moderate psychological flexibility with low/high commitment profiles, and the high psychological flexibility profile. The high psychological flexibility and moderate psychological flexibility with high commitment profiles exhibited higher life satisfaction than the moderate psychological flexibility with low commitment profile. Caregiving stressors, marital status, and caregiver status predicted the profile., Conclusion: Enhancing defusion and acceptance, rather than increasing commitment to personal values, may be beneficial in supporting distressed caregivers. Having more caregiving stressors, being single/divorced/bereaved, and being a primary caregiver may be useful indicators of decreased psychological flexibility among dementia family caregivers., (© 2024 Wiley Periodicals LLC.)

Purpose: This study aimed to investigate death anxiety (DA) in caregivers of patients with advanced cancer and identify associated factors in the context of Chinese culture., Methods: Caregivers (N = 588) of advanced cancer patients in a tertiary cancer hospital completed anonymous questionnaire surveys. Measures included the Chinese version of the Templer Death Anxiety Scale (C-T-DAS), the Quality-of-Life Scale, the State-Trait Anxiety Scale, and the Social Support Rating Scale. Data were analyzed in SPSS (IBM Corp, Armonk, NY, USA) using descriptive statistics, Pearson's correlation test, and linear regression., Results: Respondents returned 588 (93.03%) of the 632 questionnaires. The total C-T-DAS score was 7.92 ± 2.68 points. The top-scoring dimension was "Stress and pain" (3.19 ± 1.29 points), followed by "Emotion" (2.28 ± 1.31 points) and "Cognition" (1.40 ± 0.94 points). In contrast, the lowest-scoring dimension was "Time" (1.06 ± 0.77 points). Factors associated with DA (R 2  = 0.274, F = 13.348, p < 0.001) included quality of life (QoL), trait anxious personality, social support, caregiver length of care, caregiver gender, and patients' level of activities of daily living (ADL)., Conclusions: Our results demonstrated high levels of DA in caregivers of patients with advanced cancer. Generally, female caregivers and those with low social support had high DA. Caregivers caring for patients with low ADL levels or with a low QoL and trait anxious personality reported high DA. Certain associated factors help to reduce caregivers DA. Social interventions are recommended to improve the end-of-life transition and trait anxious personality as well as quality of life for caregivers., (© 2024. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Objectives: For many people with dementia and unpaid carers, using technology for care and support has become essential. Rapid proliferation of technology highlights the need to understand digital access to health and social care services for dementia. This mixed-methods systematic review aims to explore digital access to health and social care services for dementia, from the perspective of people with dementia and unpaid carers., Methods: Nine electronic databases were searched in May 2023 for qualitative, quantitative, or mixed-method studies, published in English or German, focused on experiences of using technology-delivered health and social care services for people with dementia and unpaid carers. After removal of duplicates and screening, 44 empirical papers were included., Results: From the 44 studies, findings were grouped into five categories, highlighting experiences for people with dementia and unpaid carers: (1) Adapting to technology, (2) Inequalities and variations in outcomes, (3) Impact on caring, (4) Impact on health, and (5) Impact on relationships. Proliferation of technology in care access emphasised the need for quick adaptation to technology and examination of its impact. The impact of such service delivery has evidenced mixed findings. There were improvements in the health and wellbeing of people with dementia and unpaid carers, and benefits for their dyadic relationship. However, using technology for health and social care access is not always possible and is often reliant on unpaid carers for support. Lower tech-literacy, lack of equipment or money to buy equipment and poor internet connection can impact the potential for positive outcomes., Conclusions: Technology can bring great benefits: social inclusion, improved service access and care. However, using technology in service delivery in dementia needs careful thought. Professionals and service providers need to be cognizant of the complex nature of dementia, and the benefits and challenges of hybrid service delivery., (© 2024 The Author(s). International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.)

Aim: To assess the protocol feasibility and intervention acceptability of a community-based, peer support diabetes prevention programme (DPP) for African-American (AA) grandmother caregivers at risk for diabetes., Materials and Methods: Grandmother caregivers were randomized in a 2:1 ratio to DPP (active comparator) or DPP plus HOPE (Healthy Outcomes through Peer Educators; intervention). DPP + HOPE incorporated support from a peer educator who met with participants in person or by telephone every week during the 1-year intervention. Outcomes included: (1) recruitment rates, outcome assessment, and participation adherence rates assessed quantitatively; and (2) acceptability of the programme assessed through end-of-programme focus groups., Results: We successfully consented and enrolled 78% (n = 35) of the 45 AA grandmothers screened for eligibility. Eighty percent of participants (aged 64.4 ± 5.7 years) were retained up to Week 48 (74% for DPP [n = 17] and 92% for DPP + HOPE [n = 11]). All grandmothers identified social support, neighbourhood safety, and access to grocery stores as influences on their health behaviours. At Month 12, the active comparator (DPP) group and the intervention group (DPP + HOPE) had a mean change in body weight from baseline of -3.5 ± 5.5 (-0.68, -6.29) kg and - 4.4 ± 5.7 (-0.59, -8.2) kg, respectively., Conclusions: This viable study met the aim of educating and equipping AA grandmothers with the practical and sustained support needed to work toward better health for themselves and their grandchildren, who may be at risk for diabetes. The intervention was both feasible and acceptable to participating grandmothers and their organizations., (© 2024 The Authors. Diabetes, Obesity and Metabolism published by John Wiley & Sons Ltd.)

Engaging in meaningful activities (e.g., leisure, spiritual, fitness) significantly affects caregivers' quality of life (QoL), yet the determinants of participation in caregivers of Autistic children remain largely unknown. The current study examined child and caregiver correlates of primary caregiver participation in meaningful activities. One hundred and six primary caregivers of Autistic children (7-12 years) were recruited from three unique cohorts of Autistic children in this cross-sectional study. Primary caregivers completed online questionnaires measuring occupational gaps (i.e., desired activities caregivers are not participating in), QoL, parenting stress, perceived family outcomes, and social support. In addition to undertaking direct assessments of children's cognition and language, primary caregivers also reported on their child's adaptive behavior, social-emotional skills, and participation. Caregivers reporting fewer occupational gaps (i.e., ≤2 desired activities) were more likely to have Autistic children with no co-occurring conditions, who were older, and with better adaptive behaviors, social-emotional skills, and more frequent home and school participation, compared to caregivers reporting many gaps (i.e., ≥3 desired activities). Caregivers with fewer occupational gaps also reported improved QoL, parenting stress, social support, perceived community inclusiveness, and family outcomes. Logistic regression analysis identified child age, child adaptive behavior, social-emotional skills, home participation, and the caregivers' perceived family outcomes and QoL as important predictors of their occupational gaps. The findings demonstrate that caregiver participation in desired activities was associated with increased functional ability and independence of the child, as well as their perceived capacity to meet their child's needs. Supporting parents' sense of efficacy in meeting their children's needs and building their skills and knowledge will serve to improve both caregiver and child outcomes., (© 2024 The Author(s). Autism Research published by International Society for Autism Research and Wiley Periodicals LLC.)

Purpose: To explore the mediating role of trait anxious personality in the association between quality of life (QoL) and death anxiety (DA), as well as to test the moderating effect of social support in the mediation model., Methods: The Death Anxiety Scale, Quality of Life Scale, State-Trait Anxiety Scale, and Social Support Rating Scale were used to measure 588 family caregivers of advanced cancer patients. We then constructed a moderated mediation model., Results: The presence of QoL was negatively associated with DA (β =  - 0.67, p < 0.01). Trait anxious personality partially mediated the relationship between QoL and DA (indirect effect β =  - 0.08, p < 0.01). Social support moderated both the antecedent and subsequent segments of the mediating paths of "QoL → trait anxious personality → DA" and the direct relationship between QoL and DA. Among caregivers with a low level of social support, the mediating effect coefficient of trait anxious personality was higher at 0.25 (95% confidence interval (CI): 0.059-0.182), in contrast to caregivers with a high level of social support, where the mediating effect coefficient of trait anxious personality was 0.11 (95% CI: 0.029-0.072)., Conclusion: QoL is directly associated with an increased risk of DA and indirectly related to DA by increasing the risk of trait anxious personality among caregivers. Social support can moderate the mediating effect of trait anxious personality and the relationship between QoL and DA. The intervention strategy for preventing DA among caregivers who have encountered QoL reduction should focus on reducing trait anxious personality and social support., (© 2024. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Purpose: Caregiver burden (CB) is typically self-assessed by caregivers. However, an emerging concept is assessment of CB by the recipients of care, i.e., the patient. The specific objectives are (1) to assess the level of agreement between care recipients' and caregivers' view on CB, across financial, physical, emotional, and social domains; (2) to explore two care recipient perspectives: their self-perceived burden (CR-SPB), and their interpretation of the caregiver's view (Proxy-CB)., Methods: Data were collected from 504 caregiver-care recipient dyads in the U.S. using an online Qualtrics panel. The survey assessed caregiver burden using CarerQol and newly developed items. The level of agreement between responses was quantified using weighted kappa (κ) coefficients for individual items and intraclass correlation coefficients (ICC) for index/summary scores., Results: The average age of caregivers was 49.2 years, and 62.7 years for care recipients. Dyads most commonly consisted of spouses/partners (34.5%); 68.3% lived together. Proxy-CB aligned more closely with caregiver's view, with moderate to substantial agreement across CB domains (from κ = 0.48 for emotional to κ = 0.66 for financial). In the same perspective, the CarerQol-7D Index showed moderate agreement (ICC = 0.58) and the summary score of CB items substantial agreement (ICC = 0.76). Care recipients generally overestimated  CB in the Proxy-CB perspective, while they underestimated it in the CR-SPB perspective., Conclusion: Results demonstrate there is a difference between perspectives. Strong agreement in Proxy-CB perspective suggests that care recipients can potentially substitute for caregivers depending on the domain. CR-SPB agrees less with caregivers and may provide complementary information., (© 2024. The Author(s), under exclusive licence to Springer Nature Switzerland AG.)

Background: People with learning disabilities are living longer. Despite government policy to encourage people to lead supported lives in their community, family carers often maintain support due to dissatisfaction with services. This can lead to people moving from the family home in a crisis., Objectives: (1) Find out what is known about health needs and resources for older people with learning disabilities (aged ≥ 40 years); (2) identify exemplars of good services for older people with learning disabilities; (3) explore service exemplars through ethnographic case studies; (4) evaluate support for older people with learning disabilities and their families through co-producing and testing future planning tools and (5) co-produce recommendations and resources., Design and Methods: Work package 1 rapid scoping reviews - three reviews focused on the health and social care needs of older people with learning disabilities and 'behaviours that challenge others', and family carers, and the co-ordination of support for this group. Work package 2 scoping and mapping exemplars of good practice - analysis of published service standards to assess excellence criteria, by mapping services, interviews ( n  = 30), survey ( n  = 9) and informal discussion with commissioners. Work package 3 ethnography of case studies of exemplar provision; independent supported living ( n  = 4); residential/nursing home ( n  = 2); day activities ( n  = 1), Shared Lives ( n  = 2). Fieldwork (20 days per model), interviews ( n  = 77) with older people with learning disabilities, family carers, support staff and commissioners. Work package 4 - co-producing and testing resources for older people with learning disabilities and their families involved interviews and focus groups with 36 people with learning disabilities, parents, and siblings, and experience-based co-design with 11 participants. Eight families evaluated the resources. Work package 5 - three stakeholder workshops co-produced service recommendations., Findings: The reviews confirmed an inadequate evidence base concerning the experiences and support of family carers and older people with learning disabilities and 'behaviours that challenge others'. Criteria of excellence were produced, and a shortlist of 15 services was identified for consideration in work package 3. The ethnographic work found that environmental, organisational and social factors were important, including supporting independence and choice about who people live with, matching staff to people, consistent relationships and adapting to ageing. Practices of institutionalisation were observed. In work package 4, we found that families were worried about the future and unsupported to explore options. 'Planning Ahead' cards and a booklet to record discussions were produced, and the evaluation was positively rated. Finally, formative discussion informed recommendations. Outputs include training packages, a carers' forum, a film, a podcast and academic papers., Conclusions: There is little focus on older people with learning disabilities and family carers. Services vary in their approach to planning for older-age support. Families are unsupported to plan, leaving people without choice. 'Behaviours that challenge others' was found to be unhelpful terminology. Recommendations: A new strategy is recommended for older people with learning disabilities and family carers that encompasses commissioning practices, professional input and peer learning, proactive support in ageing well and excellent service design., Limitations: The COVID-19 pandemic created recruitment challenges. Reliance on providers for recruitment resulted in a lack of diversity in work package 3. Families' plans, and therefore change, may be frustrated by insufficient service resources., Future Work: Given the lack of focus in this area, there is a range of future work to consider: experiences of older people with learning disabilities from diverse ethnic backgrounds; supporting people to age and die 'in place'; best practice regarding designing/commissioning services, including housing; the role of social workers; access to nature; accessing mainstream support; and evaluation of the 'Planning Ahead' cards., Trial Registration: This trial is registered as ISRCTN74264887., Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR129491) and is published in full in Health and Social Care Delivery Research ; Vol. 12, No. 16. See the NIHR Funding and Awards website for further award information.

Background: Research to date has detailed numerous challenges in emergency department (ED) communication with persons living with dementia (PLWD) and their caregivers. However, little is known about communication experiences of individuals belonging to minoritized racial and ethnic groups, who are disproportionately impacted by dementia and less likely to be included in dementia research., Methods: We conducted semi-structured interviews with 29 caregivers of PLWD from two urban academic hospital EDs with distinct patient populations. The first site is an ED in the Northeast serving a majority White, English-speaking, and insured population. The second site is an ED in the South serving a majority Black and/or Hispanic, Spanish-speaking, and underinsured population. Interviews lasted an average of 25 min and were digitally recorded and transcribed. We used an inductive approach to analyze interview transcripts for dominant themes and compared themes between sites., Results: Our sample included caregivers of diverse racial and ethnic backgrounds. Caregivers cared for PLWD who spoke English, Spanish, Arabic, Chinese, and Vietnamese. We identified three themes. First, caregiver advocacy was central to experiences of ED communication, particularly when PLWD primarily spoke a non-English language. Second, routine care plans did not address what mattered most to participants and PLWD. Participants felt that care arose from protocols and did not address what mattered most to them. Third, White English-speaking caregivers in Site 1 more commonly expected ED staff to engage them in care decision-making than Black, Hispanic, Asian, and Middle Eastern caregivers in Site 2., Conclusion: Language barriers amplify the higher intensity care needed by PLWD in the ED. Strategies should be developed for communicating with PLWD and caregivers about what matters most in their ED care., (© 2024 The American Geriatrics Society.)

Background: People with severe mental illness (SMI) experience higher rates and poorer outcomes of physical long-term conditions (LTCs). The management of SMI and LTCs is highly complex and many people with SMI rely on informal carers for support, which may lead to high levels of caregiver burden, and caregiver burnout. Caregiver burnout can result in poor health outcomes for informal carers and a reduction in the quality of care they are able to provide. Therefore, it is important to understand the caring experience to identify and address factors that contribute to burden and burnout., Methods: This paper reports a secondary qualitative analysis of semistructured interviews and focus groups conducted with informal carers of people who have coexisting SMI and LTCs. We recruited 12 informal carers in England between December 2018 and April 2019. The transcripts were coded and analysed thematically., Results: We identified two overarching themes and five subthemes. The themes included 'Fighting on all fronts: Mounting strain between demands and resources', which described the challenge of providing care in the context of coexisting SMI and LTCs, and 'Safekeeping: The necessity of chronic hypervigilance', which captured how informal carers' roles were defined by managing high-risk situations, leading to hypervigilance and paternalistic approaches to care., Conclusion: The experience of informal carers for people with SMI and coexisting LTCs is marked by limited access to support and the management of significant risk, which could contribute to high caregiver burden. Further primary research is needed to understand how the experiences of the caregiver role for people with SMI and LTCs influence caregiver burden., Patient or Public Contribution: Our PPI panel DIAMONDS Voice provided guidance on this study from conception, design and development of interview guides and recruitment materials to final write-up. DIAMONDS Voice consists of service users and carers who have experience of SMI and LTCs. Three carer members reviewed the final manuscript, and two are credited as authors., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

Background: The COVID-19 pandemic has created unprecedented stressors for caregivers due to social distancing requirements that simultaneously increased their responsibilities and reduced opportunities for social connection and support. This concurrent embedded mixed-methods study examined differences between caregivers and non-caregivers regarding the effects of social connectedness on perceived stress and explored challenges caregivers experienced related to social connectedness and perceived stress., Method: A national online survey containing forced-choice and free-response questions was administered between April and June 2020. The survey was distributed via social media advertisements and a crowdsourcing platform to eligible adult residents in the United States (US) fluent in either English or Spanish. Multivariable regression and thematic analysis were used to analyze the quantitative and qualitative data. Mixed-methods integration occurred during the data analysis, interpretation, and reporting phases., Results: The study sample comprised 1540 US adults (1275 non-caregivers, 265 caregivers; 65% women; 36% racial/ethnic minorities). Relative to non-caregivers, caregivers had lower levels of social connectedness and higher levels of perceived stress. Social connectedness was also inversely related to perceived stress for non-caregivers (p < 0.001) and slightly but not significantly positively related to perceived stress for caregivers. Qualitative findings showed caregivers experienced a variety of stressors including fear of COVID-19 exposure to their care recipients, disruption to usual care routines, and difficulty accessing healthcare services that may have contributed to decrements in social connectedness and higher levels of perceived stress., Conclusion: Findings suggest social connectedness may be beneficial for reducing perceived stress, but its impact can vary depending on individual circumstances. Overall, findings support the idea that caregivers are a particularly vulnerable sub-group of the population and may benefit from more targeted support and interventions., (© 2023. International Society of Behavioral Medicine.)

Latinx families face unique barriers to accessing traditional youth mental health services and may instead rely on a wide range of supports to meet youth emotional or behavioral concerns. Previous studies have typically focused on patterns of utilization for discrete services, classified by setting, specialization, or level of care (e.g., specialty outpatient, inpatient, informal supports), yet little is known about how youth support services might be accessed in tandem. This analysis used data from the Pathways to Latinx Mental Health study - a national sample of Latinx caregivers (N = 598) from across the United States collected at the start of the coronavirus pandemic (i.e., May-June 2020) - to describe the broad network of available supports that are used by Latinx caregivers. Using exploratory network analysis, we found that the use of youth psychological counseling, telepsychology, and online support groups was highly influential on support service utilization in the broader network. Specifically, Latinx caregivers who used one or more of these services for their child were more likely to report utilizing other related sources of support. We also identified five support clusters within the larger network that were interconnected through specific sources of support (i.e., outpatient counseling, crisis, religious, informal, and non-specialty). Findings offer a foundational look at the complex system of youth supports available to Latinx caregivers, highlighting areas for future study, opportunities to advance the implementation of evidence-based interventions, and channels through which to disseminate information about available services., (© 2023 Family Process Institute.)

Caregivers of children with neurodiverse needs are known to experience challenges and hardship due to the increased needs of the child and the lack of support available. This study aimed to explore the support needs and well-being of caregivers of children with neurodiverse needs in Australia. Sixty-six caregivers participated in an online survey asking questions about support needs. The results highlighted five main themes that caregivers commonly experienced including: barriers to community engagement, impact on close relationships, negative impact on mental health and identity, financial hardship, and identified support needs. Findings identified multiple unmet needs existing amongst caregivers and further emphasises the importance of addressing these needs to improve the quality of life of caregivers of children with neurodiverse needs., (© 2023. The Author(s).)

Purpose: This study explores the usability, usefulness and user experience of the Forward with Dementia website for people with dementia and family carers, and identifies strategies to improve web design for this population., Methods: The website was iteratively user-tested by 12 participants (five people with dementia, seven carers) using the Zoom platform. Data collection involved observations, semi-structured interviews and questionnaires. Integrative mixed-method data analysis was used, informed by inductive thematic qualitative analysis., Results: Users of Version 1 of the website experienced web functionality, navigation and legibility issues. Strategies for desirable web design were identified as simplifying functions, streamlining navigation and decluttering page layouts. Implementation of strategies produced improvements in usability, user experience and usefulness in Version 2, with mean System Usability Scale scores improving from 15 to 84, and mean task completion improving from 55% to 89%. The user journey for people with dementia and carers overlapped, but each group had their own unique needs in the context of web design., Conclusions: The interplay between a website's content, functionality, navigation and legibility can profoundly influence user perceptions of a website. Dementia-related websites play an important role in informing audiences of management strategies, service availability and planning for the progression of dementia. Findings of this study may assist in guiding future web development targeting this population.

We aimed to compare disclosure of social risks according to self-report on an iPad versus face-to-face questions from a health professional and to explore carers' experiences of screening. This two-arm, parallel group, randomized trial was conducted from January 19, 2021, to December 17, 2021, in a public hospital pediatric ward serving a disadvantaged area of an Australian capital city. Carers of children aged ≤ 5 years admitted to the Children's Ward were eligible. The primary outcome was disclosure of social risks. The screener included nine items on food security, household utilities, transport, employment, personal and neighborhood safety, social support, housing and homelessness. Disclosure of social risks was similar between the self-completion (n = 193) and assisted-completion (n = 193) groups for all 9 items, ranging 4.1% higher for worrying about money for food (95% CI - 11.4, 3.1%) among the assisted-completion group, to 5.7% (-1.6, 13.0%) higher for unemployment among the self-completion group. In qualitative interviews, participants were positive about screening for social risks in the hospital ward setting and the majority indicated a preference for self-completion.  Conclusion: Differences in the disclosure of social risks according to self- versus assisted-completion were small, suggesting that either method could be used. Most carers expressed a preference for self- completion, which is therefore recommended as the ideal mode for such data collection for Australian pediatric inpatient settings.  Trial registration: Australia New Zealand Clinical Trial Registry ( www.anzctry.org.au ; #ACTRN12620001326987; date of registration 8 December 2020). What is Known: • Most evidence on screening of social risks in pediatric inpatient settings is from the USA. • Little is known about disclosure of social risks in countries with universal health care and social welfare. What is New: • Disclosure of social risks was similar for electronic compared with face-to-face screening. • Carers preferred electronic completion over face-to-face completion., (© 2024. The Author(s).)

The "Convention on the Rights of Persons with Disabilities" was adopted with the intent of bringing about a paradigm shift in the way the general population perceives disability. The paper reports the findings of a qualitative inquiry that used a phenomenological approach to discuss the social grievances of persons with disabilities from a human rights-based perspective and in the context of the middle-income small island nation of The Maldives. Fifteen participants with disabilities, as well as carers and parents of children with disabilities, took part in the study. The findings indicated that the environment is physically disabling, and opportunities for participation, including access to quality education, and social protection for people with disabilities, are limited. The findings speak to the need for a shift in the social view that persons with disabilities are dependants to enabling human diversity and facilitating the capabilities of persons with disability, their dignity and meaningful engagement in society. The paper concludes there is a need to explore further approaches to encouraging a shift in society and using a human rights approach to social protection to make progress towards the "Leave No One Behind Agenda of 2030."

Aims: To map the concepts of the caring life-course theory that are used in life-course approaches from different disciplines; establish whether there is a common recognition of, or language used, to describe care in those life-course approaches; and identify the role and contribution of care to the life-course literature., Design: This discursive paper uses a narrative review process to explore points of convergence and divergence between life-course approaches and the caring life-course theory., Methods: Categories for analysis were developed deductively and inductively, focusing on the constructs of fundamental care, capacity and capability, care network, care transition, care trajectory and care biography., Results: We identified four disciplinary perspectives: (1) life-course sociology; (2) life-course epidemiology; (3) lifespan developmental psychology; and (4) life-course health development. While six core constructs of the caring life-course theory were described, either explicitly or implicitly, in existing life-course approaches, no single approach fully describes the role and contribution of care across the lifespan., Conclusion: Life-course approaches have largely neglected the contribution and role of care in informing the life-course discourse. This review highlights the significance of care beyond traditional healthcare settings and recognizes it as a fundamental human need for well-being and development, which can contribute to existing life-course literature., Implication for the Profession And/or Patient Care: There is a need to understand care as a complex system and embrace a whole-system, life-course approach to enable nurses and other healthcare professionals to provide high-quality, patient-centred care., Impact: Incorporating care within a life-course approach provides opportunities to integrate and deliver care centred around the person, their life transitions, trajectories and care networks, including informal carers and healthcare professionals., No Patient or Public Contribution: Patients or members of the public were not involved in this study as it is a discursive paper based on the relevant literature., (© 2023 The Authors. Journal of Advanced Nursing published by John Wiley & Sons Ltd.)

Objectives: The objectives of the present study were to qualitatively investigate nursing home caregivers' acceptance of, and experiences with, a new digital intervention for oral healthcare after a period of real-life testing in three nursing homes located in Rogaland county, Norway., Background: Nursing home caregivers report numerous barriers when it comes to provision of adequate oral care for care-dependent older adults. Among the reported barriers are lack of knowledge and skills, care-resistant behaviours, lack of adequate routines and documentation systems for oral health, a high workload, and unclear responsibilities. To overcome these barriers, a digital tool named SmartJournal was developed to assist caregivers in preserving nursing home residents' oral health., Materials and Methods: Semistructured interviews were performed with selected caregivers (n = 12) taking part in SmartJournal testing. A theory-driven thematic analysis based on technology acceptance model was conducted., Results: SmartJournal was generally described as a userfriendly and useful tool. The initial reaction of the participants was mixed; some were positive, some had concerns, but many seemed to have a neutral stance to the intervention. Both barriers and facilitating factors for SmartJournal usage were revealed. Interestingly, the usage gradually changed from norm-based to routine-based behaviour during the test period. Although the tool was well-accepted, as demonstrated with study participants' willingness to use it in the future, they had several suggestions for improvements to further adapt it to a nursing home setting., Conclusion: Results from the present study provide valuable information on questions about SmartJournal acceptance and intervention delivery, thereby preparing the ground for a larger scale evaluation study assessing measurable effects of SmartJournal usage in nursing homes., (© 2023 Gerodontology Association and John Wiley & Sons Ltd.)

Background: As care shifts from institutional to community settings, family caregivers are providing increasing support to older adults, including complex medical/nursing care. In the mid-late pandemic, technology advancements such as use of online patient portals present opportunities for communication and care delivery. This study aims to assess the association between caregiver medical/nursing tasks or patient portal use with contact, communication, and training of caregivers by healthcare providers., Methods: We conducted a cross-sectional analysis of caregiver data from the 2021 National Study of Caregiving (NSOC), linked to the National Health and Aging Trends Study (NHATS). NHATS is nationally-representative, annual survey of Medicare enrollees; NSOC surveys family/unpaid caregivers of NHATS participants. Logistic regression tested association between whether the caregiver does medical/nursing tasks or uses an online patient portal to contact the medical team (independent variables), and communication with or training by the medical team (dependent variables)., Results: Participants were 1590 caregivers of living, community-dwelling older adults. More than half (54%) reported no contact with the care recipient's medical team in the past year. Caregivers who did medical/nursing tasks (OR = 3.10; 95% CI: 2.16, 4.46) or who used patient portals (OR = 3.28; 95% CI: 1.96, 5.51) had higher odds of contacting the older adult's medical team. Thirty percent of caregivers stated communication was either not at all or just a little helpful. Sixty-seven percent reported that providers rarely asked if they needed help managing the older adult's treatments. Just 6% of caregivers reported receiving any caregiver training in the last year., Conclusions: Both medical/nursing tasks and online patient portal use were independently associated with contact with health providers. Overall contact, communication, and training were limited or of variable value. Despite recent policy changes and technology advancement, there is still a need for improved integration of caregivers into health teams with ongoing assessment of their needs., (© 2023 The Authors. Journal of the American Geriatrics Society published by Wiley Periodicals LLC on behalf of The American Geriatrics Society.)

Aims: The aim of this study was to explore factors that influence family caregiver readiness to adopt health smart home technology for their care-dependent older adult family member. Health smart homes are designed to remotely monitor the health and wellness of community-dwelling older adults supporting independent living for as long as possible. Accordingly, if the health smart home is deployed into the home of a care-depended older adult, it can potentially support family caregivers by facilitating workforce participation and give piece of mind to the family caregiver who may not live close to the older adult. However, wider adoption of health smart home technologies into the homes of community-older adults is low, and little is known about the factors that influence the readiness of family caregivers to adopt smart home technologies for their care-dependent older adults., Design: A qualitative Descriptive study design was utilized., Methods: Qualitative data were collected between 2019 and 2020 via semi-structured interviews. Thematic analysis of interviews was completed, and data were organized into themes., Results: Study findings show that caregiver readiness (N = 10) to adopt smart home technology to monitor older adult family members were influenced by five primary themes including a 'big brother effect', 'framing for acceptance', 'data privacy', 'burden' and 'cost.', Conclusion: Family caregivers were open to adopting smart home technology to support the independent living of their older adult family members. However, the readiness of family caregivers was inextricably linked to the older adults' readiness for smart home adoption. The family caregiver's primary concern was on how they could frame the idea of the smart home to overcome what they viewed as hesitancy to adopt in the older adult. The findings suggest that family caregivers endeavour to balance the hesitancy in their older adult family members with the potential benefits of smart home technology., Impact: Family caregivers could benefit if their care-dependent older adults adopt smart home technology. Recognizing the role of caregivers and their perspectives on using smart home technologies with their care-dependents is critical to the meaningful design, use and adoption., (© 2023 John Wiley & Sons Ltd.)

Background: Professional caregiving relationships are central to quality healthcare but are not always developed to a consistently high standard in clinical practice. Existing literature on what constitutes high-quality relationships and how they should be developed is plagued by dyadic conceptualisations; discipline, context and condition-specific research; and the absence of healthcare recipient and informal carer voices. This study aimed to address these issues by exploring how healthcare recipients and carers conceptualise good professional caregiving relationships regardless of discipline, care setting and clinical condition., Design: A qualitative story completion approach was used. Participants completed a story in response to a hypothetical stem that described a healthcare recipient (and, in some instances, carer) developing a good relationship with a new healthcare provider. Stories were analysed using reflexive thematic analysis., Participants: Participants were 35 healthcare recipients and 37 carers (n = 72 total)., Results: Participants' stories were shaped by an overarching discourse that seeking help from new providers can elicit a range of unwanted emotions for both recipients and carers (e.g., anxiety, fear, dread). These unwanted emotions were experienced in relation to recipients' presenting health problems as well as their anticipated interactions with providers. Specifically, recipient and carer characters were fearful that providers would dismiss their concerns and judge them for deciding to seek help. Good relationships were seen to develop when healthcare providers worked to relieve or minimise these unwanted emotions, ensuring healthcare recipients and carers felt comfortable and at ease with the provider and the encounter. Participants positioned healthcare providers as primarily responsible for relieving recipients' and carers' unwanted emotions, which was achieved via four approaches: (1) easing into the encounter, (2) demonstrating interest in and understanding of recipients' presenting problems, (3) validating recipients' presenting problems and (4) enabling and respecting recipient choice. Participants' stories also routinely oriented to temporality, positioning relationships within recipients' and carers' wider care networks and biographical and temporal contexts., Conclusion: The findings expand our understanding of professional caregiving relationships beyond dyadic, static conceptualisations. Specifically, the findings suggest that high-quality relationships might be achieved via a set of core healthcare provider behaviours that can be employed across disciplinary, context and condition-specific boundaries. In turn, this provides a basis to support interprofessional education and multidisciplinary healthcare delivery, enabling different healthcare disciplines, specialties, and teams to work from the same understanding of what is required to develop high-quality relationships., Patient or Public Contribution: The findings are based on stories from 72 healthcare recipient and carer participants, providing rich insight into their conceptualisations of high-quality professional caregiving relationships., (© 2023 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Objective: Understanding factors that impact health-related quality of life (HRQL) is essential to inform personalised food allergy management. However, there are inconsistencies about the impact of gender on HRQL in food allergy. This review aimed to collate all investigations of the association between gender and total or subdomain HRQL scores of individuals with food allergy and their caregivers., Design: This is a narrative systematic review. We descriptively synthesised and compared HRQL outcomes by participant and parent genders according to statistical and clinical significance. Study quality was assessed using the ROBINS-I, inclusive of all domains. Sensitivity analysis of non-interventional studies was conducted using the ROBINS-E., Data Sources: A systematic search of Medline and Embase databases was conducted on 4 April 2022 and updated on 5 December 2023., Eligibility Criteria: Studies were eligible for inclusion if they reported original data on the association between any sex and/or gender and HRQL, as measured with any validated instrument, in populations with IgE-mediated food allergy. Interventional and non-interventional studies were eligible., Results: A comparison of 34 eligible studies (10 interventional and 24 non-interventional) indicated females with food allergy (62.5% of studies of children, 83.3% of studies of adults) and mothers of children with food allergy (50% of studies of caregivers) experienced poorer self-reported baseline HRQL than their counterparts, notably in domains of physical, emotional or food anxiety-related well-being. Gender differences in child HRQL after food allergen immunotherapy were observed. However, selective reporting in included interventional studies meant the direction of this association could not be determined. The proxy-reported total HRQL of participants was not affected by caregiver gender, nor was caregiver HRQL likely impacted by child gender., Conclusions: Gender should be considered an important modifier of participant HRQL outcomes in food allergy studies. Purposeful exploration of HRQL in all genders is needed to fully understand the implications of this construct on the lived experience of food allergy., Systematic Review Registration: PROSPERO (CRD42022329901)., (© 2024 The Authors. Clinical & Experimental Allergy published by John Wiley & Sons Ltd.)

Background: Dementia care in South Africa faces challenges including a paucity of published research, a prevalent medical model in healthcare, and inadequate caregiver training. Music is a meaningful psychosocial intervention in dementia care, yet its application is not always safe and effective. A training protocol was codesigned to enhance caregivers' delivery of person-centred care through attuned, live singing., Objectives: This study explored the acceptability and caregivers' experiences of a person-centred caregiver singing (PCCS) protocol in South Africa., Methods: A PCCS workshop was applied at seven aged care homes in Cape Town, South Africa. Forty-one formal caregivers adhered to inclusion criteria and consented to attend one workshop on PCCS. Mixed methods data collection was obtained from questionnaires containing a Likert scale and written reflections. Quantitative data were analysed through nonparametric tests and narrative descriptions, and qualitative data through thematic content analysis. Findings were integrated deductively using seven components of acceptability., Results: Findings converged to show caregivers' positive experiences, highlighting observed improvements in residents' wellbeing, caregivers' capabilities, empathic connection, and person-centred care beyond the one-on-one. Caregivers' limited song repertoire and residents' unpredictability hindered implementation, however, the skills acquired appeared useful and applicable., Conclusions: Integration of findings suggests the acceptability of PCCS as caregivers experienced PCCS as a helpful, easy-to-implement intervention that contributes to their delivery of person-centred care. Further research focused on caregiver self-efficacy, empathy, and caregivers' own personhood is needed as well as determining the most effective strategies to ensure maximum uptake and sustainability in the sector., Patient or Public Contribution: Formal caregivers participated in this study, both attending the training and implementing the singing protocol with residents in their care at their respective care homes. The people living with dementia residing at the care home were recipients of the singing protocol but not included as participants in the research., (© 2023 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

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Objective: The purpose of this paper was to examine variables associated with food insecurity among community college caregivers during the COVID-19 pandemic. Methods: We used data from a multi-institutional survey of 15,051 caregivers enrolled at 130 community colleges in 42 states in fall 2020. We used a logistic regression to examine whether demographic, academic, caregiving-related, financial, or COVID-19-related variables were associated with caregivers' food insecurity. Results: Over half (52%) of community college caregivers experienced food insecurity. Transgender caregivers, first-generation caregivers, and caregivers who were divorced or single, had multiple disabilities, were previously in foster care, and had a family that experienced trouble making ends meet growing up had significantly (p < 0.05) higher probabilities of experiencing food insecurity. Community college caregivers who used childcare and those with at least one child up to 12 years old also had increased probabilities of experiencing food insecurity. Moreover, caregivers who felt childcare was not affordable and believed that they did not earn enough money to make employment worthwhile after paying for childcare expenses had higher probabilities of experiencing food insecurity, as did those who experienced housing insecurity and used Pell grants, student loans, and support from friends or family to pay for college. Losing a job, experiencing cuts to work hours or wages, employment as a frontline worker, and contracting COVID were associated with higher probabilities of food insecurity. Contributions: Community college caregivers experienced high rates of food insecurity during the pandemic and some caregivers were at greater risk of exacerbated probabilities of food insecurity. We advocate for targeted interventions, wraparound services, and increased advocacy for legislation to support student caregivers.

Background: Eating disorders in childhood and adolescence negatively affect many areas of development and functioning of children, adolescents, and their families. Psychoeducation has an important role in management and treatment of eating disorders., Methods: A systematic literature review was performed using multiple databases (PsycInfo, PubMed, and Web of Science). The inclusion criteria comprised empirical studies of psychoeducation for patients with eating disorders or their caregivers. The study reporting quality was assessed with the revised Cochrane Collaboration's risk of bias tool and the Standard Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields for non-randomized studies., Results: Ten studies met the inclusion criteria, in three of which the interventions were patient-centred and in seven of which the interventions were caregiver-centred. The studies differed in terms of methodology, outcome measures, and quality. The results suggest that psychoeducation is an effective intervention for children, adolescents and caregivers in the treatment of eating disorders. It may lead to weight gain, a decrease in eating disorder symptoms, and a reduction in caregiver burden., Conclusions: There is a need for more randomized controlled trials to determine the effectiveness of psychoeducation for children, adolescents and caregivers in treatment of eating disorders., (© 2023 The Authors. European Eating Disorders Review published by Eating Disorders Association and John Wiley & Sons Ltd.)

Experiencing cancer impinges life in several ways. Research on the biographical implications of cancer has focused on its disruptive nature. Biographical renewal is not given full attention despite existing literature on positive transformations after cancer. This conceptual paper presents an account of biographical renewal in the milieu of cancer survivorship. Further, we discussed some crucial facilitators that promote the biographical renewal. Caregivers may consider biographical renewal as a substantially new goal in the survivorship care plan to improve patients' quality of life. The discussion is designed to foster an understanding of biographical renewal for the psychosocial practice by professionals with cancer patients, survivors, and their caregivers – formal and informal, to provide comprehensive care during cancer survivorship. Implications for palliative care are also discussed. [ABSTRACT FROM AUTHOR]

Objective: The objective of this proposed scoping review is to identify and map the available evidence on interventions that aim to help informal caregivers identify and/or manage delirium in an older person at home. Introduction: Delirium is a neurocognitive condition characterized by acute confusion and is associated with increased risk of morbidity and mortality. Research estimates delirium to be present in 17% of community-dwellers aged 85 and older, increasing proportionally with age to 45% in those aged 90 and older. Delirium often occurs at the onset of an older person's acute illness or exacerbation of a chronic illness (sometimes while at home) and, because of its protracted nature, usually continues after a hospital stay. Even when an older person's delirium resolves during hospitalization, they remain at risk of its recurrence after discharge home. Consequently, knowing how to detect and manage delirium is critical for informal caregivers of older people at home. However, there are no reviews focused exclusively on this topic in this setting. Inclusion criteria: The population of interest includes informal caregivers of a person aged 65+. Concepts of interest include delirium detection and/or management interventions. The context of interest is any setting where informal care is delivered, including the transition from hospital to home, in any geographical area. Materials and methods: The review will be conducted according to the JBI guidelines for scoping reviews. A three-step search strategy will be used to locate both published and unpublished papers in MEDLINE, Embase, CINAHL, PsycINFO, Web of Science Core Collection, ProQuest Nursing & Allied Health, SCOPUS, LILACS, and SciELO, PQD&T, NDLTD, Google Scholar and Google. No language restrictions will be placed on the review. Papers will be screened for eligibility at the title, abstract, and full text level by two independent reviewers. Data will be extracted by two independent reviewers and managed in Covidence. Any disagreements in screening or data extraction will be resolved by consensus or a third reviewer. Results will be summarised in narrative and tabular formats. [ABSTRACT FROM AUTHOR]

This paper presents findings from a campus climate survey conducted at an Australian university. Unprecedented compositional diversity now exists in higher education, with students enrolled from different religious, socio-economic, geographic, and cultural backgrounds. Despite this diversity, little research has been conducted into the ways that different student groups experience university, including marginalised and 'hidden' groups such as LGBTIQA+ students. The survey aimed to uncover the impact of diversity on student experiences, including the extent to which students associated with others from different backgrounds, the extent to which their own views and beliefs were challenged, and the extent to which they felt safe on campus. Findings suggest a need for more targeted research, particularly into the experiences of marginalised groups, and for reform of both institutional policy and curriculum. Further, we found that students are frequently thinking about identity, diversity, and bias, and their own voices need to be elevated within institutional strategies.