A systematic review of digital access to post-diagnostic health and social care services for dementia.

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.

Psychological distress among family caregivers of persons with Alzheimer's disease and related dementias in Uganda.

BACKGROUND: Alzheimer's disease and related dementias (ADRD) present growing global health challenges, especially in aging populations, such as Uganda. In Uganda, familial caregiving, predominantly undertaken by female relatives, is the primary form of support provided to patients with ADRD. Cultural stigma around dementia and limited access to support services amplify caregivers' challenges. This study examined psychological distress, depression, and quality of life (QoL) among family caregivers of patients with ADRD in Wakiso District, Uganda. METHODS: This cross-sectional study involved 90 caregivers from three sub-counties in Wakiso, selected through purposive sampling to capture diverse experiences. Participants included caregivers aged 18 years and older who were knowledgeable and had cared for a person with ADRD for not less than six months, with those providing more than 70% of physical care being prioritised. Data were collected using the Kessler Psychological Distress Scale, the Caregiver Dementia Quality of Life Measurement Scale, and the Center for Epidemiologic Studies Depression Scale, with an 80% response rate achieved through local collaboration. The statistical analyses focused on psychological distress, QoL, and depression. RESULTS: The study included 82.2% females and 17.8% males, with a median age of 52 years for females and 35 years, respectively. Females were more likely to be single or widowed, whereas males were more likely to be married. The study revealed a high prevalence of psychological distress and depression among caregivers (64.4%) regardless of sex. The analysis indicated that having children was a significant predictor of better QoL (OR 3.04, 95% CI 1.79-5.66, p = 0.034) and a lower risk of depression (OR 0.10, 95% CI 0.01-0.86, p = 0.036). No other sociodemographic factors were significantly associated with health outcomes across the models. CONCLUSION: Our findings revealed a heavy burden of psychological distress and depression among Ugandan caregivers of patients with ADRD, highlighting the need for structured support systems, including mental health services and gender-responsive interventions in low-resource settings.

Bridging the gaps in pediatric complex healthcare: the case for home nursing care among children with medical complexity.

BACKGROUND: Children with medical complexity (CMC) comprise < 1% of the pediatric population, but account for nearly one-third of healthcare expenditures. Further, while CMC account for up to 80% of pediatric inpatient hospital costs, only 2% of Medicaid spending is attributed to home healthcare. As a result, the current health system heavily relies on family caregivers to fill existing care gaps. This study aimed to: (1) examine factors associated with hospital admissions among CMC and (2) contextualize the potential for home nursing care to improve outcomes among CMC and their families in South Carolina (SC). METHODS: This mixed-methods study was conducted among CMC, their family caregivers, and physicians in SC. Electronic health records data from a primary care clinic within a large health system (7/1/2022-6/30/2023) was analyzed. Logistic regression examined factors associated with hospitalizations among CMC. In-depth interviews (N = 15) were conducted among physicians and caregivers of CMC statewide. Patient-level quantitative data is triangulated with conceptual findings from interviews. RESULTS: Overall, 39.87% of CMC experienced ≥ 1 hospitalization in the past 12 months. CMC with higher hospitalization risk were dependent on respiratory or neurological/neuromuscular medical devices, not non-Hispanic White, and demonstrated higher healthcare utilization. Interview findings contextualized efforts to reduce hospitalizations, and suggested adaptations related to capacity and willingness to provide complex care for CMC and their families. CONCLUSIONS: Findings may inform multi-level solutions for accessible, high-quality home nursing care among CMC and their families. Providers may learn from caregivers' insight to emphasize family-centered care practices, acknowledging time and financial constraints while optimizing the quality of medical care provided in the home.

A protocol for the formative evaluation of the implementation of patient-reported outcome measures in child and adolescent mental health services as part of a learning health system.

BACKGROUND: Mental health conditions affect one in seven young people and research suggests that current mental health services are not meeting the needs of most children and youth. Learning health systems are an approach to enhancing services through rapid, routinized cycles of continuous learning and improvement. Patient-reported outcome measures provide a key data source for learning health systems. They have also been shown to improve outcomes for patients when integrated into routine clinical care. However, implementing these measures into health systems is a challenging process. This paper describes a protocol for a formative evaluation of the implementation of patient-reported measures in a newly operational child and adolescent mental health centre in Calgary, Canada. The purpose is to optimize the collection and use of patient-reported outcome measures. Our specific objectives are to assess the implementation progress, identify barriers and facilitators to implementation, and explore patient, caregivers and clinician experiences of using these measures in routine clinical care. METHODS: This study is a mixed-methods, formative evaluation using the Consolidated Framework for Implementation Research. Participants include patients and caregivers who have used the centre's services, as well as leadership, clinical and support staff at the centre. Focus groups and semi-structured interviews will be conducted to assess barriers and facilitators to the implementation and sustainability of the use of patient-reported outcome measures, as well as individuals' experiences with using these measures within clinical care. The data generated by the patient-reported measures over the first five months of the centre's operation will be analyzed to understand implementation progress, as well as validity of the chosen measures for the centres' population. DISCUSSION: The findings of this evaluation will help to identify and address the factors that are affecting the successful implementation of patient-reported measures at the centre. They will inform the co-design of strategies to improve implementation with key stakeholders, which include patients, clinical staff, and leadership at the centre. To our knowledge, this is the first study of the implementation of patient-reported outcome measures in child and adolescent mental health services and our findings can be used to enhance future implementation efforts in similar settings.

Translation to Portuguese and cross-cultural adaptation of the epilepsy transition readiness checklist for use in Brazil.

OBJECTIVES: Planning for the child and adolescent to have a safe handling in the epilepsy transition process is essential. In this work, the authors translated the "Readiness Checklists" and applied them to a group of patients and their respective caregivers in the transition process to assess the possibility of using them as a monitoring and instructional instrument. METHODS: The "Readiness Checklists" were applied to thirty adolescents with epilepsy and their caregivers. The original English version of this instrument underwent a process of translation and cultural adaptation by a translator with knowledge of English and epilepsy. Subsequently, it was carried out the back-translation and the Portuguese version was compared to the original, analyzing discrepancies, thus obtaining the final version for the Brazilian population. RESULTS: Participants were able to answer the questions. In four questions there was an association between the teenagers' educational level and the response pattern to the questionnaires. The authors found a strong positive correlation between the responses of adolescents and caregivers (RhoSpearman = 0.837; p < 0.001). The application of the questionnaire by the health team was feasible for all interviewed patients and their respective caregivers. CONCLUSION: The translation and application of the "Readiness Checklists" is feasible in Portuguese. Patients with lower educational levels felt less prepared for the transition than patients with higher educational levels, independently of age. Adolescents and caregivers showed similar perceptions regarding patients' abilities. The lists can be very useful tools to assess and plan the follow-up of the population of patients with epilepsy in the process of transition.

Validation of the Chinese version of the 'caring ability of family caregivers of patients with cancer scale (CAFCPCS)' in family caregivers of elderly patients with cancer: A study protocol.

AIM: This study aims to translate the English version of the 'caring ability of family caregivers of patients with cancer scale (CAFCPCS)' into Chinese and validate its psychometric properties in the family caregivers of elderly patients with cancer. DESIGN: A methodological study. METHODS: Based on the Brislin translation model, the original scale will be translated and back-translated, the Delphi expert consultation method will be adopted for cross-cultural adaptation, and the pilot will be carried out in 20-30 family caregivers of elderly patients with cancer. Then, a dual-centre prospective study will be conducted by recruiting 371-542 family caregivers of elderly patients with cancer to validate the psychometric properties of the Chinese version of CAFCPCS. RESULTS: The scale's content validity will be evaluated using the Delphi expert inquiry method, and the face validity will be evaluated using a pre-experiment. Exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) will be used to assess structural validity, while internal consistency reliability and split-half reliability will be used to assess reliability. PATIENT OR PUBLIC CONTRIBUTION: Public involvement is of great significance for this study. Participants will be used in a pre-test to give feedback on whether the contents of the clinical pilot version of CAFCPCS after expert consultation can reflect real problems and whether the sentences can be well understood. Based on their opinions, the research group will further refine the scale.

Examining predictors of loneliness among Older Americans Act National Family Caregiver Support Program participants.

Family caregivers may be at particular risk for social isolation and loneliness. Multiple factors can impact caregivers' health and well-being outcomes, including loneliness. Guided by an adaptation of the Stress Process Model of Caregiving, this study uses the 2019 National Survey of Older Americans Act Participants (NSOAAP)-Family Caregiver Support module to inform efforts to reduce loneliness through family caregiver support programs. A hierarchical multiple regression model reveals that caregivers who report more loneliness are more likely to be female, Hispanic, living alone, not a child or other caregiver of the care recipient, have a care recipient with 3+ ADL needs, experience more social life conflict related to caregiving, experience less joy in caregiving, feel less appreciated by the care recipient, feel less support in caregiving, and attend counseling. This study helps advance the goals of the National Strategy to Support Family Caregivers, and the findings underscore the importance of continuing and expanding efforts to address loneliness and related well-being outcomes among family caregivers.

Evaluating the Potential and Pitfalls of AI-Powered Conversational Agents as Humanlike Virtual Health Carers in the Remote Management of Noncommunicable Diseases: Scoping Review.

BACKGROUND: The rising prevalence of noncommunicable diseases (NCDs) worldwide and the high recent mortality rates (74.4%) associated with them, especially in low- and middle-income countries, is causing a substantial global burden of disease, necessitating innovative and sustainable long-term care solutions. OBJECTIVE: This scoping review aims to investigate the impact of artificial intelligence (AI)-based conversational agents (CAs)-including chatbots, voicebots, and anthropomorphic digital avatars-as human-like health caregivers in the remote management of NCDs as well as identify critical areas for future research and provide insights into how these technologies might be used effectively in health care to personalize NCD management strategies. METHODS: A broad literature search was conducted in July 2023 in 6 electronic databases-Ovid MEDLINE, Embase, PsycINFO, PubMed, CINAHL, and Web of Science-using the search terms "conversational agents," "artificial intelligence," and "noncommunicable diseases," including their associated synonyms. We also manually searched gray literature using sources such as ProQuest Central, ResearchGate, ACM Digital Library, and Google Scholar. We included empirical studies published in English from January 2010 to July 2023 focusing solely on health care-oriented applications of CAs used for remote management of NCDs. The narrative synthesis approach was used to collate and summarize the relevant information extracted from the included studies. RESULTS: The literature search yielded a total of 43 studies that matched the inclusion criteria. Our review unveiled four significant findings: (1) higher user acceptance and compliance with anthropomorphic and avatar-based CAs for remote care; (2) an existing gap in the development of personalized, empathetic, and contextually aware CAs for effective emotional and social interaction with users, along with limited consideration of ethical concerns such as data privacy and patient safety; (3) inadequate evidence of the efficacy of CAs in NCD self-management despite a moderate to high level of optimism among health care professionals regarding CAs' potential in remote health care; and (4) CAs primarily being used for supporting nonpharmacological interventions such as behavioral or lifestyle modifications and patient education for the self-management of NCDs. CONCLUSIONS: This review makes a unique contribution to the field by not only providing a quantifiable impact analysis but also identifying the areas requiring imminent scholarly attention for the ethical, empathetic, and efficacious implementation of AI in NCD care. This serves as an academic cornerstone for future research in AI-assisted health care for NCD management. TRIAL REGISTRATION: Open Science Framework; https://doi.org/10.17605/OSF.IO/GU5PX.

Factor structure of FUNDES-Child-SE measuring the participation and independence of children with disabilities.

BACKGROUND: FUNDES-Child-SE is a proxy rating questionnaire for measuring participation and independence in children with disabilities in a Swedish context. It includes the components of frequency of attendance, engagement and independence. The original, Taiwanese FUNDES-Child 7.0, has previously been found to have a four-factor structure for frequency of participation and a two-factor structure for independence. The aim of this study was to test the factor structure in FUNDES-Child-SE. The factor structure is an important part of construct validity. METHODS: Caregivers of 163 children with disabilities aged 6-18 years participated in this cross-sectional study. Exploratory factor analysis was used to find the factor structure for Engagement. Confirmatory factor analysis was used to test the factor structure for all three components. RESULTS: The proposed factor structure for frequency of participation (daily living participation frequency, mobility participation frequency, learning participation frequency and community participation frequency) and independence (daily living independence and social participation independence) fit with data from FUNDES-Child-SE after excluding three to five items and adding two to five covariances of residuals. In the engagement component, two factors, named engagement in informal activities and engagement in formal activities, were found. After excluding one item and adding 10 covariances of residuals, the factor structure had an acceptable fit to data. CONCLUSIONS: Differences in components' factor structure indicate that attendance and engagement are separate aspects of participation. Before using numeric scores from FUNDES-Child-SE in clinical settings, responsiveness and interpretability should be evaluated.

Gender Inequalities of Health and Quality of Life in Informal Caregivers in Spain: Protocol for the Longitudinal and Multicenter CUIDAR-SE Study.

BACKGROUND: The aging population and increased disability prevalence in Spain have heightened the demand for long-term care. Informal caregiving, primarily performed by women, plays a crucial role in this scenario. This protocol outlines the CUIDAR-SE study, focusing on the gender-specific impact of informal caregiving on health and quality of life among caregivers in Andalusia and the Basque Country from 2013 to 2024. OBJECTIVE: This study aims to analyze the gender differences in health and quality of life indicators of informal caregivers residing in 2 Spanish autonomous communities (Granada, Andalusia, and Gipuzkoa; Basque Country) and their evolution over time, in relation to the characteristics of caregivers, the caregiving situation, and support received. METHODS: The CUIDAR-SE study uses a longitudinal, multicenter design across 3 phases, tracking health and quality of life indicators among informal caregivers. Using a questionnaire adapted to the Spanish context that uses validated scales and multilevel analysis, the research captures changes in caregivers' experiences amid societal crises, notably the 2008 economic crisis and the COVID-19 pandemic. A multistage randomized cluster sampling technique is used to minimize study design effects. RESULTS: Funding for the CUIDAR-SE study was in 3 phases starting in January 2013, 2017, and 2021, spanning a 10-year period. Data collection commenced in 2013 and continued annually, except for 2016 and 2020 due to financial and pandemic-related challenges. As of March 2024, a total of 1294 participants have been enrolled, with data collection ongoing for 2023. Initial data analysis focused on gender disparities in caregiver health, quality of life, burden, perceived needs, and received support, with results from phase I published. Currently, analysis is ongoing for phases II and III, as well as longitudinal analysis across all phases. CONCLUSIONS: This protocol aims to provide comprehensive insights into caregiving dynamics and caregivers' experiences over time, as well as understand the role of caregiving on gender inequality in health, considering regional variations. Despite limitations in participant recruitment, focusing on registered caregivers, the study offers a detailed exploration of the health impacts of caregiving in Spain. The incorporation of a gender perspective and the examination of diverse contextual factors enrich the study's depth, contributing significantly to the discourse on caregiving health complexities in Spain. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/58440.

Post-traumatic stress disorder symptoms following exposure to acute psychological trauma in children aged 8-16 years in South Africa: protocol for the Sinethemba longitudinal study.

INTRODUCTION: Children exposed to trauma are vulnerable to developing post-traumatic stress disorder (PTSD) and other adverse mental health outcomes. In low-and middle-income countries (LMICs), children are at increased risk of exposure to severe trauma and co-occurring adversities. However, relative to high-income countries, there is limited evidence of the factors that predict good versus poor psychological recovery following trauma exposure in LMIC children, and the role of caregiver support in these high-adversity communities. METHODS AND ANALYSIS: We will conduct a longitudinal, observational study of 250 children aged 8-16 years and their caregivers in South Africa, following child exposure to acute trauma. Dyads will be recruited from community hospitals following a potentially traumatic event, such as a motor vehicle accident or assault. Potential participants will be identified during their hospital visit, and if they agree, will subsequently be contacted by study researchers. Assessments will take place within 4 weeks of the traumatic event, with 3-month and 6-month follow-up assessments. Participants will provide a narrative description of the traumatic event and complete questionnaires designed to give information about social and psychological risk factors. Child PTSD symptoms will be the primary outcome, and wider trauma-related mental health (depression, anxiety, behavioural problems) will be secondary outcomes. Regression-based methods will be used to examine the association of psychosocial factors in the acute phase following trauma, including caregiver support and responding, with child PTSD and wider mental health outcomes. ETHICS AND DISSEMINATION: Ethical approvals have been granted by Stellenbosch University and the University of Bath, with additional approvals to recruit via hospitals and healthcare clinics being granted by the University of Cape Town, the Department of Health and the City of Cape Town. Study findings will be disseminated via publication in journals, workshops for practitioners and policy-makers, and public engagement events.

'There was nothing, just absolute darkness': Understanding the needs of those caring for children and young people with complex neurodisability in a diverse UK context: A qualitative exploration in the ENCOMPASS study.

BACKGROUND: Children and young people (CYP) with complex neurodisability experience multiple physical, communication, educational and social challenges, which require complex packages of multidisciplinary care. Part of the holistic care required includes supporting the families and parents/caregivers. The aim of the wider study was to introduce a new programme ('Ubuntu') to parents/caregivers and healthcare professionals (HCPs) in order to test the feasibility and acceptability of the concept and content, with the goal of potential adaptation for the UK in mind. Data collection and analysis uncovered rich data on caregiving journeys, navigation of health services, and perceived service gaps. This paper focuses solely on these topics. Further papers will report on the feasibility and adaptation data. METHODS: Two rounds of semi-structured interviews were conducted with 12 caregivers of CYP with complex neurodisability and six HCPs from a variety of disciplines, recruited from a community child health service in London Borough of Newham, UK in 2020. The interviews included open-ended questions to explore caregiving journeys, experiences of navigating health services and perceived service gaps. Transcripts were analysed using a data-driven inductive thematic analysis. RESULTS: Three themes were identified that related to the aim of understanding caregivers' experiences and unmet needs relating to current service provision. These were (1) Caregiver Mental Health, (2) The Information Gap and (3) The Need for Holistic Support. Mental health difficulties were reported, particularly around the period of diagnosis. Priority needs included the provision of clear information about the diagnosis and services offered, opportunities to forge peer support networks and for services across the community to collaborate. CONCLUSIONS: The delivery of health services for CYP with neurodisability should encompass the broad needs of the family as well as meeting the clinical needs of the CYP.

Acceptability and preliminary effects of the volunteer-supported Meaningful Moments program to engage older adults with advanced dementia on a hospital-based specialized dementia care unit: a mixed methods study.

BACKGROUND: Namaste Care offers practical skills for healthcare providers, volunteers, and families to meaningfully engage individuals with dementia in activities (e.g., music, massage, reminiscing, socialization, aromatherapy, snacks). A hospital-based specialized dementia care unit for patients with mid- to late-stage dementia offered an adapted version of the Namaste Care program, which was called Meaningful Moments. The aim of this study was to assess the acceptability and preliminary effects of this novel approach using trained volunteers for older adults with mid- to late-stage dementia. METHODS: A mixed methods multiphase design was used. Qualitative description was used to explore acceptability of the Meaningful Moments program delivered over 6 months through focus groups (e.g., charge nurses, therapeutic recreationists, nurses, social workers) and individual interviews with one volunteer and two family members. A prospective pre-post-test study design was used to evaluate the preliminary effects of the program for patients with dementia and family members. Outcomes included quality of life, neuropsychiatric symptoms, and pain for patients with dementia and family carer role stress and the quality of visits for families. Data were collected from June 2018 to April 2019. Descriptive analyses of participants' characteristics were expressed as a mean (standard deviation [SD]) for continuous variables and count (percent) for categorical variables. Focus group and individual interview data were analyzed using thematic analysis. The generalized estimating equations (GEE) method was used to assess change in the repeated measures outcome data. RESULTS: A total of 15 patients received the Meaningful Moments interventions. Families, staff, and volunteers perceived that patients experienced benefits from Meaningful Moments. Staff, volunteers, and families felt fulfilled in their role of engaging patients in the Meaningful Moments program. Individualized activities provided by volunteers were perceived as necessary for the patient population. There were no statistically significant improvements in patient outcomes. There was a statistically significant decline in family carer role stress. CONCLUSIONS: Using a one-on-one approach by volunteers, patients experienced perceived benefits such as improved mood and opportunities for social interactions. There is a need for tailored activities for older adults with advanced dementia through practical strategies that can offer benefit to patients.

Experiences of healthcare providers and caregivers regarding health system bottlenecks affecting child healthcare service delivery in a rural district: Empirical qualitative study.

AIM: To explore the experiences of nurses and caregivers about the health system bottlenecks to the delivery of child healthcare services in a rural district in Ghana. DESIGN: The study employed a qualitative approach using an exploratory, descriptive design. METHODS: Collection of data was through semi-structured, face-to-face interviews with 26 participants in the Nkwanta South Municipality, Ghana. Audio recordings of interviews were transcribed verbatim and analysed qualitatively. Inductive codes generated were organised into themes and sub-themes. RESULTS: The main health system bottlenecks that emerged were the poor state of in-patient facilities, inadequate basic logistics and persistent shortage of essential medicines needed for child healthcare delivery. CONCLUSIONS: Health system bottlenecks have the tendency to affect the treatment and hospitalisation outcomes of sick children and eventually impact the state of child healthcare negatively. Concerted efforts by government and local authorities to remove these barriers will help to improve child health and child health outcomes. PUBLIC CONTRIBUTION: A total of 26 participants comprising nurses and caregivers, agreed and participated in this study. Interviews with these participants were conducts either in the health facilities or in the communities where they live. Their responses contributed significantly to the content of this article.

Death anxiety among caregivers of patients with advanced cancer: a cross-sectional survey.

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 (R2 = 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.

What determines informal care need among community-dwelling older adults in China? Results from a longitudinal study.

BACKGROUND: With an intensified aging population and an associated upsurge of informal care need in China, there is an ongoing discussion around what factors influence this need among older adults. Most existing studies are cross-sectional and do not focus on older people living in the community. Conversely, this study empirically explores the factors that affect informal care need of Chinese community-dwelling older individuals based on longitudinal data. METHODS: This study constructed panel data using the China Health and Retirement Longitudinal Research Study (CHARLS) from 2011 to 2018 for analysis. Generalized linear mixed models were used to analyze the factors affecting reception of informal care, and linear mixed models were used to analyze the factors affecting informal care sources and intensity. RESULTS: During the follow-up period, 7542, 6386, 5087, and 4052 older adults were included in 2011-2018, respectively. The proportion receiving informal care increased from 19.92 to 30.78%, and the proportion receiving high-intensity care increased from 6.42 to 8.42% during this period. Disability (estimate = 4.27, P < 0.001) and living arrangement (estimate = 0.42, P < 0.001) were the critical determinants of informal care need. The rural older adults reported a greater tendency to receive informal care (estimate = 0.14, P < 0.001). However, financial support from children did not affect informal care need (P > 0.05). CONCLUSIONS: At present, there is a great demand for the manpower and intensity of informal care, and the cost of informal care is on the rise. There are differences in informal care needs of special older groups, such as the oldest-old, living alone and severely disabled. In the future, the region should promote the balance of urban and rural care service resources, rationally tilt economic support resources to rural areas, reduce the inequality of long-term care resources, improve the informal care support system, and provide a strong community guarantee for the local aging of the older adults.

Endogenous Control and Reward-based Mechanisms Shape Infants' Attention Biases to Caregiver Faces.

Infants rely on developing attention skills to identify relevant stimuli in their environments. Although caregivers are socially rewarding and a critical source of information, they are also one of many stimuli that compete for infants' attention. Young infants preferentially hold attention on caregiver faces, but it is unknown whether they also preferentially orient to caregivers and the extent to which these attention biases reflect reward-based attention mechanisms. To address these questions, we measured 4- to 10-month-old infants' (N = 64) frequency of orienting and duration of looking to caregiver and stranger faces within multi-item arrays. We also assessed whether infants' attention to these faces related to individual differences in Surgency, an indirect index of reward sensitivity. Although infants did not show biased attention to caregiver versus stranger faces at the group level, infants were increasingly biased to orient to stranger faces with age and infants with higher Surgency scores showed more robust attention orienting and attention holding biases to caregiver faces. These effects varied based on the selective attention demands of the task, suggesting that infants' attention biases to caregiver faces may reflect both developing attention control skills and reward-based attention mechanisms.

Comprehensive insights into health services accessibility and quality of life of families with individuals with 22q11.2 deletion syndrome in Brazil.

BACKGROUND: The 22q11.2 Deletion Syndrome (22q11.2 DS) presents unique healthcare challenges for affected individuals, families, and healthcare systems. Despite its rarity, 22q11.2 DS is the most common microdeletion syndrome in humans, emphasizing the need to understand and address the distinctive healthcare requirements of those affected. This paper examines the multifaceted issue of health service access and caregivers' quality of life in the context of 22q11.2 DS in Brazil, a condition with diverse signs and symptoms requiring multidisciplinary care. This study employs a comprehensive approach to evaluate health service accessibility and the quality of life of caregivers of individuals with 22q11.2 DS. It utilizes a structured Survey and the WHOQOL-bref questionnaire for data collection. RESULTS: Individuals with 22q11.2 DS continue to receive incomplete clinical management after obtaining the diagnosis, even in the face of socioeconomic status that enabled an average age of diagnosis that precedes that found in sample groups that are more representative of the Brazilian population (mean of 3.2 years versus 10 years, respectively). In turn, caring for individuals with 22q11.2 DS who face difficulty accessing health services impacts the quality of life associated with the caregivers' environment of residence. CONCLUSIONS: Results obtained help bridge the research gap in understanding how caring for individuals with multisystem clinical conditions such as 22q11.2 DS and difficulties in accessing health are intertwined with aspects of quality of life in Brazil. This research paves the way for more inclusive healthcare policies and interventions to enhance the quality of life for families affected by this syndrome.

Development and Evaluation of Content Validity and Acceptance of a Multidomain Intervention Module for Reversal of Cognitive Frailty Among Older Adults.

Purpose: There is a limited availability of multidomain interventions that target cognitive frailty. Thus, the aim of the present study was to develop and evaluate the content validity and acceptance of the multidomain intervention module to reverse cognitive frailty among older adults (iAGELESS). Patients and Methods: This study was conducted in two phases: Phase I included the development of the multidomain intervention module iAGELESS and evaluation of content validity, while Phase II consisted of evaluating the acceptance of the module among 18 healthcare and social care providers, 13 older adults with cognitive frailty, and 13 caregivers. Content validity index (CVI) was used to quantify the content validity. Respondents completed a questionnaire which consisted of information on sociodemographic, followed by module acceptance evaluation with respect to content, terminologies, and graphics. The data was then analyzed descriptively. Results: A multidomain intervention module, iAGELESS was developed. The module was found to have appropriate content validity (overall CVI = 0.83). All the caregivers, 92% of older adults with cognitive frailty and 83% of healthcare and social care providers were satisfied with the overall content of the module. More than 50% of those who accepted the module had satisfactory consensus on the ease of the terminologies, length of sentences, pictures, information, color, and font size included in the module. Conclusion: The iAGELESS module demonstrated good content validity and was well accepted, thus warranting its utilization in future studies to determine its effectiveness in reversing cognitive frailty among older adults.