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Previous research has explored the physical activity habits of people with dementia and their family carers separately, with little consideration of how physical habits are associated within dyads. In this observational study, we sought to explore the relationship between people with dementia and their carers' physical activity, at a group level and at a dyadic level. Twenty-six participant dyads (persons with dementia and their carer spouses) were asked to wear an accelerometer for 30 days continuously. Comparisons were made at a group level and a dyadic level. People with dementia did not participate in significantly more moderate to vigorous physical activity (M = 15.44 min/day; SD = 14.40) compared with carers (M = 17.95 min/day; SD = 17.01). Within dyads, there were moderately strong associations between daily moderate to vigorous physical activity (r =.48–.54), but not with overall activity levels (r =.24). Despite physical activity habits remaining relatively low within people with dementia and carers, respectively, moderate to vigorous physical activity levels appear to be correlated within dyads. Understanding mutual influence on physical activity levels within dyads is an important pathway to promote an active lifestyle. [ABSTRACT FROM AUTHOR]

Background and Objectives: Scholarship on the health of family caregivers to older adults continues to expand. Although existing research suggests that many family caregivers experience pain, which impacts their ability to perform caregiving tasks and is associated with care recipients' unmet needs, the scope of research on family caregivers' pain remains poorly characterized. We conducted a scoping review of research on pain among family caregivers to older adults to characterize existing evidence and identify knowledge gaps. Methods: We searched multiple databases spanning from January 2012 to July 2023, identified eligible studies using predefined inclusion/exclusion criteria, and extracted key data (e.g., study design/methodology, pain measurement, caregiver pain type, and major findings). Results: We identified 46 eligible studies conducted in the United States (n = 19) and internationally (n = 27). Studies often focused on caregivers for older adults with specific health conditions, such as cancer (n = 11), dementia (n = 8), or stroke (n = 3). The most commonly employed pain measure was a single‐item dichotomous question about pain (n = 16), followed by a visual numeric or visual analog scale (n = 11). Nine studies (five randomized controlled trials) reported on five caregiver pain management interventions, including yoga/exercise programs and caregiver education programs. Discussion: Existing research on family caregivers' pain offers an important foundation. However, more robust research designs are necessary. We identify possibilities for future studies in addition to opportunities for systematic investigations to support the family caregivers being relied upon to care for the increasing number of older adults. [ABSTRACT FROM AUTHOR]

Background: The health‐related quality of life instrument with 8 items (HINT‐8) was developed to measure health‐related quality of life (HRQoL) in Korea. However, the HINT‐8 has not yet been validated among the family caregivers of people with dementia (PwD). Design: A cross‐sectional pilot study. Objective: The study aimed to examine the convergent and discriminant validity of the HINT‐8 among family caregivers of individuals with dementia. Sample: Forty‐seven family caregivers of PwD. Measurements: HINT‐8 was compared with the 5‐level EQ‐5D (EQ‐5D‐5L) to assess its convergent and discriminant validity. Additionally, the association between the two instruments assessing HRQoL was examined using the short‐form Bédard‐Zarit Burden Interview (SZBI). Results: The HINT‐8 was a promising and valid HRQoL instrument for family caregivers of PwD. There was a significantly high correlation between the overall HINT‐8 and EQ‐5D‐5L indices (r = 0.85, p <.001). The HINT‐8 had acceptable psychometric properties compared to the commonly used EQ‐5D‐5L, as indicated by the subdomains associated with family caregiversʼ burden measured by the SZBI. Conclusion: Future studies should compare the HINT‐8 with existing dementia carer‐specific QoL instruments among a larger study sample to enhance its statistical power and confirm its reliability and structural validity. [ABSTRACT FROM AUTHOR]

Background: Depressive moods and behaviors are developmentally normative, yet potentially impairing, in preschool‐aged children. In addition to frequency, duration of behavior is an important parameter to consider when characterizing risk for worsening mood dysregulation. The goal of this study was to identify the duration and severity of depressive moods and behaviors and associations with impairment in a large community sample of preschool‐aged children using an online parent‐report daily diary. Methods: Primary caregivers (N = 900) of 3–5‐year‐old children reported the daily duration of each instance of seven depressive moods and behaviors for 14 days. We used item response theory analyses to examine duration item characteristics. Results: Moods and behaviors occurred at specific durations to be considered psychometrically severe/rare; for example, instances of sadness had to last an average total of 32 min per day or more, irritability at least 38 min, tantrums at least 30 min, and tearfulness/sensitivity at least 35 min. Longer durations of mood and behavior were associated with daily impairment, as well as older child age and less parental education. Conclusions: To our knowledge, this is the first study to delineate specific duration ranges for depressive moods and behaviors in preschool‐aged children. These data, coupled with information about the frequency of mood‐related behaviors, can assist child practitioners in differentiating normative patterns from less normative mood problems to evaluate which children may be at risk. Future work should identify the duration of depressive moods and behaviors in early childhood that predict clinically significant psychopathology over time. [ABSTRACT FROM AUTHOR]

The rate of usage of community elderly care services in China is low, and past studies about the effects of these services on caregiver burden domestically are few. This study used a large sample of Beijing census data (n = 55,634) to examine the impact of these services on caregiver burden. Logistic regression and propensity score matching were used to estimate the effects. The results showed that meal assistance, respite care, and spiritual comfort are all significantly associated with a lower likelihood of perceived emotional burden among caregivers, while only respite care is very significantly associated with a lower likelihood of feeling physically burdened. However, the effects of these services on caregiver burden also depend on the activities of daily living performance and location of residence of the care recipients. The practical implications for policy makers are discussed. [ABSTRACT FROM AUTHOR]

Purpose: The Program for the Education and Enrichment of Relational Skills (PEERS®) is a group-based social skills training program for adolescents on the autism spectrum. Although the program has been shown to be effective in improving social skills in autistic adolescents, evidence of its effectiveness from the Mandarin-speaking Chinese population is sparse. The present study used a non-randomized, pre- and post-intervention research design to investigate the feasibility and cultural validity of the program, as well as examine the moderators of intervention outcomes. Methods: Thirty-three autistic adolescents with intelligence quotient above 70 (Mage = 13.57, SDage = 1.43; Male: Female 25:8) and their parents received 14 concurrent 90-minute sessions. Adolescents' autistic traits, challenging behaviors, emotional functioning, socio-cognitive process, social environment factors (school support), and caregivers' well-being were evaluated. Results: The findings suggest that with minor adjustments, the Mandarin version of PEERS® was generally acceptable and feasible for autistic adolescents and their parents. PEERS® may improve the social skills knowledge, reciprocal communication abilities, and emotional well-being of autistic adolescents. Also, participants with a higher level of school support, and parents with lower perceived subjective well-being at baseline may gain more benefits from PEERS®. The cultural adaptation and acceptability of the Mandarin Version of PEERS® were discussed. Conclusion: This feasibility study (Chinese Clinical Trial Registry: ChiCTR2200061417, 2022-06-23, retrospectively registered) provides a basis for further randomized control trials of the Mandarin version of PEERS®. [ABSTRACT FROM AUTHOR]

Advancements in early diagnosis and paediatric cardiac surgery have improved the long-term survival of patients with congenital heart disease, necessitating a thorough assessment of their health-related quality of life (HRQoL). This study aimed to assess HRQoL in paediatric patients with coarctation of the aorta (CoA) (both as reported by patients and caregivers), and to evaluate associated factors. Patients aged 5–18 years diagnosed with CoA and their parents were enrolled at Bambino Gesù Children's Hospital between September 2016 and December 2017. Socio-demographic characteristics were recorded using a family form, and the Pediatric Quality of Life Inventory (PedsQL) 3.0 cardiac module was used to evaluate HRQoL. Clinical data were retrieved from medical chart reviews. In this observational study, sixty-five pediatric patients (39 males, median [IQR] age 12 [9–14]) with CoA and their parents (65 mothers and 65 fathers) were enrolled. These patients exhibited overall good HRQoL. Mothers reported significantly lower total HRQoL scores compared to patient self-reports (p =.037), as well as treatment anxiety (p =.033), and cognitive problems (p =.021). Pediatric patients with CoA perceived their HRQoL better than their mothers did. Female sex and older age were associated with lower HRQoL scores. [ABSTRACT FROM AUTHOR]

The study aimed to explore the relationship between family resilience, post-traumatic growth(PTG), and caregiver burden among family caregivers of stroke survivors. Researchers conducted a cross-sectional study to recruit 253 family caregivers of stroke survivors from a public hospital in Shandong Province, China. Caregivers completed sociodemographic information, the Shortened Chinese Version of the Family Resilience Assessment Scale, the Post-traumatic Growth Inventory, and the Zarit Caregiver Burden Interview. We used Amos 24.0 to construct structural equation models and examine the mediating effects of stroke survivors' post-traumatic growth. Family resilience was positively associated with post-traumatic growth, and both family resilience and post-traumatic growth were negatively associated with caregiver burden. Post-traumatic growth partially mediated the relationship between family resilience and caregiver burden, and the mediating effect accounted for 21.27% of the total effect. Targeted interventions should address family resilience and post-traumatic growth as protective factors of caregiver burden. [ABSTRACT FROM AUTHOR]

Purpose: Patients with hematologic malignancies (HM) typically rely on informal caregivers for support. Caregivers experience distress, poorer health, and lower quality of life. This study aimed to understand caregivers' experiences adapting to, and making meaning of, their family members' cancer diagnosis and treatment. Approach: Qualitative, constructivist approach. Participants: Caregivers (N = 28) of patients with HM within three months of diagnosis. Methods: A descriptive content analysis was used to analyze semi-structured interview responses and generate themes. Findings: Six themes emerged: power and control (powerlessness, empowerment, relinquishing control/accepting help), protection (gatekeeping, protective buffering), integrating the diagnosis, tolerating uncertainty, preparedness for the caregiver role, and maintaining positivity. Conclusions: Findings highlight challenges and resilience-promoting processes for caregivers adapting to HM diagnosis and treatment. Implications for Psychosocial Providers: Psychological and supportive care interventions can promote acceptance of the diagnosis, preparation for caregiving, navigation of power and control, and targeted coping strategies. [ABSTRACT FROM AUTHOR]

BACKGROUND: Despite historical and contemporary trauma, American Indian and Alaska Native (AIAN; Indigenous) communities responded with resilience to the COVID‐19 pandemic. However, AIANs experienced disproportionate rates of infection, hospitalization, death, and reduced life expectancy. School closures exacerbated disparities, leading to learning loss, economic instability, and mental health challenges among AIAN youth. METHODS: The Project SafeSchools cohort study employed a comprehensive longitudinal convergent mixed‐methods approach, integrating community‐based participatory research principles. The study enrolled Navajo Nation caregivers whose children were eligible to attend local reservation‐based schools. We conducted an analysis of caregiver self‐report baseline data collected between August 2021 and May 2022. RESULTS: A total of 242 caregivers completed at least part of the baseline assessment and were included in data analysis. Caregivers were primarily female (88.7%), non‐Hispanic (97%), and Indigenous (97%). Most caregivers were in their late 30s (mean age 38), with varying educational backgrounds and employment statuses. Children were evenly split between males and females and distributed across different age groups. Most children attended school at baseline in various formats, including in‐person, hybrid, and online‐only settings. Caregivers reported a range of psychosocial and behavioral risks, including general mental distress, depressive symptoms, and anxiety for themselves and their children. Furthermore, caregivers and children exhibited various protective factors, such as strong cultural identity, resilience, and academic self‐efficacy. CONCLUSIONS: This study highlights the higher rates of mental health distress among participating caregivers and children compared to national averages. Despite these challenges, cultural protective factors remained strong and should guide future crisis response efforts. [ABSTRACT FROM AUTHOR]

Unpaid carers are a significant support for dependent people with chronic illnesses in most countries. Working carers have specific needs because they face a conflict between employment and care. This study reports on the views of seven working carers in Taiwan to discover the factors they might have considered when arranging publicly funded Long-Term Care (LTC) services for the person they care for to reconcile their work and care. According to the testimony of working carers, the issue of safety for care recipients motivates the application for LTC services. However, LTC services in Taiwan, while affordable, are limited. Working carers have a positive attitude towards home care due to its low price and flexible service time. The constructed barriers to accessing daycare make it difficult for families to use daycare, even though it may be the most suitable service for care recipients. The findings have implications for improvements in LTC services. They show that an extension of opening hours of daycare is needed to meet the employment needs of working carers and that care skill training should be offered for providers of LTC services. [ABSTRACT FROM AUTHOR]

Aim s : The objective of this study was to examine the relationship between caregiving burden and pre‐death grief, with a specific focus on adult‐child caregivers in mainland China. Additionally, the study explored whether coping strategies played a mediating role in this correlation. Methods: A convenience sample of 320 adult‐child caregivers of older parents with dementia from Kunming, mainland China, was recruited for the study. Data were collected using the Chinese version of the Marwit‐Meuser Caregiver Grief Inventory‐Short Form, the Burden Scale for Family Caregivers, and the Ways of Coping Checklist‐Revised. Results: Results using linear regression and multiple mediation analysis with Hayes' process model indicated that caregiving burden was positively related to pre‐death grief and that active coping mediated the relationship between them. In the female group, active coping partially mediated the association between caregiving burden and pre‐death grief, but in the male group, this mediating effect did not exist. Conclusion: The study found evidence supporting the link between caregiving burden and pre‐death grief among adult‐child caregivers of older parents with dementia in mainland China. Furthermore, the caregiving burden prevented the use of active coping, and this decrease in coping increased the perception of pre‐death grief. These associations only existed in the female group. Implications: This paper presented the importance of active coping skills in the dementia caregiving process. Impact: The findings of this study emphasize the necessity for health practitioners to provide targeted interventions regarding pre‐death grief among dementia caregivers and strengthen caregivers' active coping strategies to reduce their pre‐death grief. Community‐based and personal care support services should be promoted to alleviate their caregiving burden. Reporting Method: We have adhered to the transparent reporting of evaluations with quantitative design statements and the corresponding checklist was followed. Patient or Public Contribution: 'No patient or public involvement'. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

China is a country with a strong tradition of family-centered care, and family members are the main caregivers for children with disabilities. This article aims to explore how they overcome difficulties when faced with challenges and to examine the emergence of family resilience. This study adopted a qualitative research method, and two rounds of in-depth interviews were conducted with 15 families. The findings combined family resilience theory and inductive themes from empirical experiences. As a result of the stigma associated with disability, such families may feel ashamed and lose their 'face'. Their family belief system includes the destiny view and living in the moment, which allows them to make sense of their situation and maintain a positive outlook. Conclusions revealed how parents perceive their situation and construct their family's organizational and communication patterns to cope with challenges. Points of interest: In China, families of children with disabilities face a wide range of pressures, including stigma associated with disabilities, a heavy economic burden and tense family relationships. Parents and other family members are the primary caregivers of children with disabilities, with the government playing only a supporting role. Family belief system involving living in the moment helps these families to make meaning of their situation and maintain a positive outlook. Families of children with disabilities in China have developed their own culturally-based family organization and communication style to develop resilience. The research recommended that a family-centered social support system should be developed to help these families foster resilience. [ABSTRACT FROM AUTHOR]

Background: There has been a significant increase in the number of young people with eating difficulties (EDs), and current waiting times are not meeting the standard recommended by the National Health Service. Therefore, TIC+, a mental health charity in Gloucestershire, launched an ED counselling service, TEDS. The service aimed to promptly provide young people with person‐centred counselling as an alternative option for support. Aims: Very few studies have investigated the experience of individuals with EDs who are engaging with person‐centred counselling, and exploration of this can help us to ascertain whether the approach should be more widely deployed while also informing service development for TEDS. Materials and Methods: This study qualitatively explored young people and their caregivers' experiences of the service using semi‐structured interviews; four young people and four caregivers took part. Data were analysed using thematic analysis. Results: The findings revealed that the person‐centred counselling provided was valuable for young people, with improvements to their EDs evident. Discussion: However, there were several barriers to counselling that must be addressed. Furthermore, caregivers experienced a sense of loss of control and helplessness, which may have ramifications for young people too, demonstrating a need to consider how best to support caregivers. Conclusion: There is preliminary support for the use of person‐centred counselling for young people with eating difficulites. [ABSTRACT FROM AUTHOR]

Background: Moving out of the family home is a key transition for people with intellectual disabilities and their families. Yet there has been little research about parents' experiences of planning the move of their young adult offspring to residential settings offering 24-hour support. Method: Interviews were conducted with eleven parents whose offspring moved to residential settings within the past 5 years (five fathers; six mothers). They consisted of structured questions about planning their offsprings' moves and semi-structured questions about parents' experiences. Results: Content analysis of the structured questions revealed reasons parents began thinking about the moves and routes to finding information. The thematic analysis highlighted the emotional challenges parents faced. Conclusions: The findings highlight the need to address this neglected topic and ensure that practical and emotional support is put in place to plan positive futures, rather than relying on families to use their own initiative or waiting until a crisis occurs. [ABSTRACT FROM AUTHOR]

Adult siblings without disabilities play important roles in relation to their brothers and sisters with intellectual disabilities. This study reviewed knowledge about adult sibling relationships in Chinese societies, where one sibling has intellectual disability. Five English and two Chinese databases were searched for publications published up to 2022. Findings, based on 14 identified articles show that sibling relationships are considered in the context of parent-child relationships. Little attention is given to the nature of sibling relationships per se. Rather, research in Chinese societies generally frames sibling relationships as one-way caregiving, and where siblings' caregiving responsibilities are inherited from parents, increase as parents age and are organised according to gender and birth order. These findings contrast to Western studies where increasingly perspectives of adults with intellectual disabilities are sought and the reciprocal nature of sibling relationships is highlighted. Future research in Chinese societies may benefit from exploring aspects of relationships beyond caregiving. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Children growing up with a parent with mental ill-health are a hidden and vulnerable group. Positioned at the intersection between adult and children services, and health and social care, these children fall between the gaps, rarely acknowledged in policy or practice. This is exacerbated when the young person is excluded under the auspices of patient confidentiality and age appropriateness. This article reports findings from research which captured young carers' retrospective accounts of professional support when caring for a parent with mental illness. Participants in this research study described being 'involved but not included'; they provided significant care to their parent and were relied on by professionals to provide support. However, they were simultaneously omitted from any discussion or understanding of the decisions made. This article explores the relevance of these accounts for current service provision. It concludes with recommendations for involving young carers in care planning and ensuring that young carers have their own needs assessed and acknowledged by professionals. [ABSTRACT FROM AUTHOR]

Background: Heart failure (HF) is a complex problem characterized by frequent hospitalizations and high 30-day readmission rates. Researchers studying HF readmission report that patients and clinicians have different perspectives on readmission and preventability when unadjusted for disease severity. Objective: The aim of this study was to gather patient, caregiver, nurse, and physician subjective reason(s) for 30-day HF readmission and perceptions of preventability with contextual factors to evaluate differences. Methods: A convergent, parallel, mixed-methods design was used with interviews and chart reviews to evaluate contextual factors from the current and index hospital stay. Adults readmitted within 30 days of a previous inpatient stay with a coded HF diagnosis were enrolled and interviewed, followed by interviews with associated caregivers, attending physicians, and assigned nurses. Results: Interviews were conducted with patients (n = 44), caregivers (n = 6), physicians (n = 24), and nurses (n = 44). Readmissions were emergent/urgent (95%) and occurred within 14.9 days (SD, 8.1; 2-28 days) on average after discharge. Index stay coding revealed that most patients (73%) had a high severity of illness (73%) and risk of mortality (68%). Heart failure stage was inconsistently documented. Patients reported acute symptomatic reasons, with only 32% describing readmission as preventable. Physicians reported diagnostic reasons, 38% of which were preventable. Nurses reported behavioral reasons, with 59% being preventable. Patient/clinician agreement on readmission reason was low(30%). Conclusions: Patient/clinician perspectives on readmission varied among the patients with complex HF. Care planning based on HF stage and other contextual factors is needed to ensure a shared understanding of disease severity and a tailored symptom management approach to prevent readmission. [ABSTRACT FROM AUTHOR]

Self-efficacy, perceived social support, and resilience in caregivers of first-stroke patients are closely related, while the interaction mechanism remains unclear. This research explores the mediation effect of self-efficacy in the relationship between perceived social support and resilience in caregivers of first-stroke patients in China. Convenience sampling was designed and used to recruit participants from the General Hospital of Northern Theater in Shenyang, Liaoning Province, China, from February to October 2022, in which 207 self-reported participants completed the Connor-Davidson Resilience Scale (CD-RISC), Multidimensional Scale of Perceived Social Support (MSPSS) and General Self Efficacy Scale (GSES). In addition, the mediation effect of self-efficacy between perceived social support and resilience was determined by the PROCESS macro for SPSS. Among the 207 caregivers of patients with first-stroke, the mean CD-RISC, MSPPS and GSES scores were (72.17 ± 11.28), (71.17 ± 8.99), and (29.64 ± 5.03) respectively. Caregivers' self-efficacy was positively correlated with perceived social support (r = 0.439, p < 0.01) and resilience (r = 0.730, p < 0.01). Self-efficacy served a mediation function partially between perceived social support and resilience, whose effect accounted for 52.90% of the total. Both simple and mediation roles of perceived social support and self-efficacy are established in the relationship of resilience among caregivers of first-stroke patients. Positive social support and self-efficacy are two important targets for future interventional studies, and interventions on them may synergistically improve resilience. Hence, the nurses and community workers should correctly evaluate social support and self-efficacy, confirm the health education requirements, and implement counseling intervention to protect and improve the health of first-stroke patients and their families. [ABSTRACT FROM AUTHOR]

Studies on the COVID-19 pandemic highlight detrimental effects of social distancing on mental health. These effects were also observed among caregivers of people with intellectual and developmental disabilities (IDD), who undergo particular challenges in this context. This study aimed to identify the coping strategies adopted by caregivers of people with IDD in the period of social isolation during the COVID-19 pandemic and their relationship to signs of mental illness. Forty-eight caregivers of people with IDD who were users of a non-governmental organization for the assistance of people with IDD and their families in southeastern Brazil undertook an on-line survey. Data analysis included descriptive statistics, Pearson's correlation, multiple regression, and the word cloud technique. Results indicate that most caregivers employed healthy coping strategies and used negative words to describe their feelings towards the pandemic. Confrontation, withdrawal, self-control, social support, acceptance, and escape correlated with psychological symptoms (stress, depression, or loneliness). Those symptoms were more prevalent among participants using escape as a coping strategy. These findings indicate that caregivers of people with National Deworming Day (NDD) used mostly positive coping strategies to face the COVID-19 pandemic, which may have contributed to the low prevalence of psychological burden in this population. [ABSTRACT FROM AUTHOR]

Objective: The population of women ages 50 years and older living with HIV is increasing. Yet, little is known about the care networks that older women living with HIV (OWLH) use to manage their health. The goal of this study was to explore the caregiving and care receiving relationships among OWLH and how these relationships impact HIV management. Methods: OWLH aged 50 years and older were recruited from clinics and community-based organizations across the U.S. We conducted semi-structured, in-depth phone interviews and performed content and thematic analysis on transcripts. Results: Participants (N = 23) were on average 60 years old and had been living with HIV for an average of 23.7 years. Participants 1) relied on diverse care networks; 2) were caregivers for grandchildren and parents; 3) had pride and joy in being caregivers; and 4) were highly proactive in their own HIV management. Care networks promoted self-love and acceptance. However, concerns about aging with HIV were still highly prevalent. Conclusion: Being a caregiver and care recipient are sources of meaning and strength to help OWLH manage HIV. Public health programs should consider engaging both OWLH and their care networks in healthcare discussions and educational efforts. [ABSTRACT FROM AUTHOR]

Objective: Our goal was to compare data collected from 3- and 7-day Infant with Clefts Observation Outcomes (iCOO) diaries. Design: Secondary data analysis of an observational longitudinal cohort study. Caregivers completed the daily iCOO for 7 days before cleft lip surgery (T0) and for 7 days after cleft lip repair (T1). We compared 3- and 7-day diaries collected at T0 and 3- and 7-day diaries collected at T1. Setting: United States. Participants: Primary caregivers of infants with cleft lip with and without cleft palate (N = 131) planning lip repair and enrolled in original iCOO study. Main Outcomes Measure(s): Mean differences and Pearson correlation coefficients. Results: Correlation coefficients were high for global impressions (>0.90) and scaled scores (0.80–0.98). Mean differences were small across iCOO domains at T0. T1 comparisons reflected the same pattern. Conclusions: Three-day diary data is comparable to 7-day diaries for measuring caregiver observations using iCOO across T0 and T1. [ABSTRACT FROM AUTHOR]

Background: The caregiving scholarship widely acknowledges informal caregivers' contributions to maintaining older adults' health and well-being. However, informal caregivers encounter economic, physical, social, financial and psychological challenges when caring for older adults. The caregiving literature has shown variations in caregiving intensity and motivation between rural and urban informal caregivers of older adults. This situation is likely to result in rural-urban disparities in caregiver burden. However, the literature on predictors of caregiver burden is more focused on demographic, socio-economic, caregiving and health-related factors with very little attention to geographical dynamics. For this reason, the effects of demographic, socio-economic, caregiving, and health-related factors on the variations in caregiver burden between rural and urban informal caregivers of older adults are yet to be known in the sub-Saharan African context, including Ghana. Notably, the impact of geographical location on caregiver burden is mainly missing in the informal caregiving literature in Ghana. Situated within the stress process model, we determine the association between geographical location and caregiver burden among informal caregivers of older adults in Ghana. Methods: This study employed data from a large cross-sectional survey on informal caregiving, health, and healthcare among caregivers of older adults aged 50 years or above (N = 1,853) in Ghana. We selected the World Health Organization Impact of Caregiving Scale to measure caregiver burden. Generalized multivariable linear regression models were employed to determine the association between geographical location and caregiver burden among informal caregivers of older adults. We reported beta values and standard errors with significance levels of 0.05 or less. Results: The results showed that rural informal caregivers of older adults significantly have a decreased caregiver burden compared to urban informal caregivers (β = -1.64; SE = 0.41). Also, participants across all the self-rated health categories (poor/very poor: β = 12.63; SE = 1.65; fair: β = 9.56; SE = 1.07; good: β = 11.00; SE = 0.61, very good: β = 7.03; SE = 0.49) have a significantly increased caregiver burden for the full sample and for both rural (poor/very poor: β = 13.88; SE = 2.4; fair: β = 6.11; SE = 1.62; good: β = 9.97; SE = 0.96, very good: β = 6.06; SE = 0.71) and urban (poor/very poor: β = 11.86; SE = 2.25; fair: β = 12.33; SE = 1.42; good: β = 11.80; SE = 0.79, very good: β = 7.90; SE = 0.67) participants. This study further revealed that participants with no financial support needs reported a decreased caregiver burden compared to those with financial support needs for the full sample (β = -2.92, p-value < 0.01) and for both rural (β = -3.20; p-value < 0.01) and urban (β =-2.70; p-value < 0.01) participants. Conclusion: The findings from this study underscore geographical location differences in caregiver burden among informal caregivers of older adults in Ghana. Given these findings, the need to consider geographical location variations in providing welfare and health support programs to lessen caregiver burden among informal caregivers of older adults is welcomed. In line with the stress process model, such welfare and health programs should consider background, context, and stressor factors that contribute to variations in caregiver burden between rural and urban informal caregivers of older adults in Ghana and other sub-Saharan African countries. [ABSTRACT FROM AUTHOR]

Although the long-term consequences of informal care provision have been well investigated, few studies have examined the trajectories of informal care provision among older people and the socioeconomic, demographic, health, and family characteristics associated with them. We use data from four waves of the English Longitudinal Study of Ageing, with 6561 respondents followed for 6 years (2012/3–2018/9). We used group-based trajectory modelling to group people's provision of care over time into a finite number of distinct trajectories of caregiving. Using multinomial logistic regressions, we then investigated the characteristics associated with these trajectories. Four distinct trajectories of caregiving were identified: "stable intensive", "increasing intensive", "decreasing", and "stable no care". Results suggest that although there are socioeconomic, demographic, and health differences across the trajectories of caregiving (with younger women in good health and poorer socioeconomic status more likely to care intensively throughout), family characteristics are their main drivers. Respondents who live alone, with no children, and no parents alive are more likely to never provide care, whereas those with older parents and who live with adults in poor health are more likely to provide stable intensive care. Also, changes in family characteristics (e.g. death of parents, widowhood, or deterioration of the partner's health) are associated with trajectories representing increases or decreases in caregiving over time. Overall, trajectories of informal caregiving undertaken by older people are varied and these patterns are mostly associated with both the availability and health of family members, suggesting that need factors represent the most immediate reason for caregiving commitments. [ABSTRACT FROM AUTHOR]

Family-centered values are important for caregiving. However, findings on their association with burden are inconsistent. We aim to analyze whether positive aspects of caregiving are mediating the effect of familism on burden among informal caregivers of older adults in Germany. Participants (n = 277) were drawn from the Attitudes Toward Informal Caregivers (ATTIC) project and include informal long-term caregivers of older relatives (aged ≥ 60) quota-sampled from Germany (December 2023). Mediation analyses (linear OLS regression) with robust standard errors were conducted with the classic and the counterfactual causal mediation framework. The classic approach indicated a significant positive direct effect of familism on burden, a significant negative direct effect of PAC on burden and a significant negative indirect effect of familism via PAC on burden; the total effect was not significant. The causal mediation approach supports this; the interaction between familism and PAC was not significant. Thus, sociocultural family-centered values seemed to worsen burden but also to reduce it through positive experiences of caregiving, which did not depend on the strength of familism values. The findings advance our understanding of the mechanisms underlying the stress appraisal of the informal care situation and emphasize the role of positive experiences of care. [ABSTRACT FROM AUTHOR]

This study aimed to identify differences among body mass index (BMI) categories of older family caregivers (=60 years) and their care recipients (=65 years). Secondly, this study aimed to examine group differences and factors associated with weight change during a nutrition and oral health intervention. This secondary analysis of a randomized controlled trial (ClinicalTrial.gov (NCT04003493)) involved individually tailored nutritional guidance from a clinical nutritionist and oral health guidance from a dental hygienist. Baseline BMI differences were analyzed, followed by further analyses of group differences and associated factors of weight change over a 6-month period using generalized estimating equations. Among the participants (113 family caregivers and 107 care recipients), 36.3% and 35.1% were overweight (BMI >29 kg/m²), while 18.6% and 21.6% were underweight (BMI <24 kg/m²) at baseline, respectively. For family caregivers differences in BMI categories included age, mid-arm and calf circumferences, and plasma prealbumin concentration. For care recipients differences were observed in medication use, mid-arm and calf circumferences, Mini Nutritional Assessment scores, physical function, and number of teeth. During the 6-month intervention, there were no differences in weight change between intervention and control groups for both caregivers and care recipients. Factors significantly associated (p < 0.05) with weight loss included female sex for both caregivers and care recipients, and frailty for caregivers. Family caregivers' characteristics were not significantly associated with weight change in their care recipients. In conclusion, being overweight is a prevalent among older family caregivers and care recipients. Factors such as age, medication use, physical function, number of teeth, and Mini Nutritional Assessment scores varied across BMI categories. Female sex was associated with weight loss in both older family caregivers and care recipients, and frailty was associated with weight loss in caregivers. However, the characteristics of family caregivers did not explain the weight loss of their care recipients. [ABSTRACT FROM AUTHOR]

Background: A long-term assessment of stroke outcomes from the perspectives of patients and their caregivers is important for optimising long-term post-stroke care. The extended effects of stroke caregiving, particularly caregiver burden beyond 5 years since stroke, remain to be determined. Hence, this study aimed to determine caregiver burden at 10 years after stroke, compare the burden severity at 10 years with its levels at 5 years and 6 months after stroke, and identify predictors of the burden severity at 10 years post-stroke. Methods: A longitudinal follow-up study including a group of first-ever stroke patients/informal continuous caregivers pairs was followed for 10 years and interviewed face-to face at their home setting. Caregiver burden was evaluated with the Caregiver Burden Scale. Potential predictors were examined using standardised measures and identified by applying the Classification and Regression Tree. Results: A total of 40 caregiver/patient pairs participated in the study. At 10 years, 47.5% of the caregivers experienced a considerable burden. This was more than after 5 years (17.5%) and comparable to that after 6 months (37.5%), p < 0.003. Longer time spent caregiving, caregivers' weaker sense of coherence, more severe stroke, and caregivers' anxiety were the independent predictors of considerable burden 10 years after stroke. Conclusions: Caregivers' burden in the late chronic post-stroke phase is a significant problem, as nearly half of the caregivers experience a substantial burden. This problem mainly concerns individuals who spend at least 7 h daily caregiving and have a lower Sense of Coherence. The long-term evaluation of stroke consequences reported by stroke patients and their caregivers can be an important source of information for healthcare professionals in order to optimise the care and support they provide at various stages of life after stroke. [ABSTRACT FROM AUTHOR]

Background: Spanish-speakers with non-English language preference and complex medical needs suffer disparities in quality of care, safety, and health outcomes. Communication challenges during prolonged hospitalizations for complex illnesses negatively influence how this group engages in their care and decision-making while hospitalized. Limited literature capturing the perspectives of Spanish-speaking patients in this context exists. Given the impact of language barriers on care and medical decision-making, this study documents the experiences of Spanish-speaking patients with NELP and hospitalized with complex care needs as well as caregivers and community leaders. Methods: Using community-engaged recruitment strategies and semi-structured interviews and a focus group, we gathered insights from Spanish-speaking patients hospitalized for prolonged periods, caregivers, and community leaders from three geographic regions. Data were deidentified, transcribed, translated, coded in duplicate, and analyzed guided by grounded theory using NVivo. Results: We interviewed 40 participants: 27 patients, 10 caregivers and 3 community leaders. We identified four major themes: (1) Disconnected experiences impeding interactions, communication, and decision-making (2) Inadequate interpreter services (3) Benefits and consequences of family at the bedside (4) Community -informed recommendations. Conclusion: The study showed that in-person interpreters were preferred to virtual interpreters; yet interpreter access was suboptimal. This resulted in ad hoc family interpretation. Participants noted language negatively impacted patient's hospital experience, including decreasing confidence in medical decision-making. Recommendations from patients, caregivers, and community leaders included expanding interpreter access, bolstering interpreter quality and accuracy, and increasing resources for patient education. [ABSTRACT FROM AUTHOR]

This study examined whether maternal depression is related to Early Childhood Developmental (ECD) delay among children by quantifying the mediating contribution of responsive caregiving. We used data from 1235 children (Children's mean age = 50.4 months; 582 girls, 653 boys, 93.9% were Han), selected through convenience sampling, in 2021. 4.7% of children had ECD delay, 34.3% of mothers had depression. Children with depressed mothers were less likely to receive responsive caregiving (OR 4.35, 95% CI 2.60–7.27), and those who did not receive responsive caregiving were more likely to experience ECD delay (OR 3.89, 95% CI 1.89–8.02). Responsive caregiving partly mediated the relationship between maternal depression and ECD. Early intervention for children with depressed mothers is worthy of further investigation. [ABSTRACT FROM AUTHOR]

Background: Glioblastoma, a high-grade primary brain cancer, has a median survival of approximately 14 months. Post-mortem brain donation provides insight to pathogenesis along with spatial and temporal heterogeneity. Post-mortem brain biobanking programs are increasing in number and the need to understand and improve the associated human experience is pressing. This study aims to qualitatively explore the experiences of next of kin (NOK) following the death and brain donation of a loved one and to understand the impact such programs have on NOK carers. Method: We interviewed 29 NOK following the death of their loved one and subsequent brain donation. Thematic analysis was conducted on the transcribed, qualitative interviews. Results: Four themes were identified; (1) Brain donation is a straightforward decision grounded in altruism and pragmatism; (2) Supporting donors is a source of comfort, pride and empowerment; (3) Brain donation can provide meaning for suffering and tragedy and (4) Perceptions of procedures and processes when supporting a loved one to donate. Insights into areas for improvement, for example transporting donors following a home death and the role of the body bag were also noted. Conclusion: Supporting a loved one to donate their brain can be a positive experience providing a source of hope, empowerment and purpose for NOK. Data indicating areas for consideration are broadly relevant for improving the delivery of brain donation programs for future donors and their loved ones. Plain language summary: Understanding how loved ones feel about someone close to them donating their brain to research after their death from brain cancer The act of donating brain tissue after death from brain cancer is a huge gift to medical research and may have an impact on the ability of the scientific community to improve outcomes for people diagnosed with brain cancers. While we understand how valuable these donations are for research, we need more work to understand how these donations impact the people who donate and those who love and support them. This paper explores the experiences of people who have lost someone to brain cancer who then went on to donate their brain tissue after their death. Through the use of interviews, it explores the impact that the donation has on a loved one or next of kin from providing a source of comfort, empowerment, pride or an alternative to 'senseless' suffering and tragedy. It also provides areas that should be considered by people who are facilitating brain donations to ensure that any potential, harm or upset can be minimized. [ABSTRACT FROM AUTHOR]

Many people living with dementia and unpaid carers experience inequalities in care related to challenges in receiving a correct diagnosis, care and support. Whilst complexities of the evidence are well recognised including barriers in receiving a diagnosis or post-diagnostic care, no coherent model has captured the far-reaching types and levels of inequalities to date. Building on the established Dahlgren & Whitehead Rainbow model of health determinants, this paper introduces the new Dementia Inequalities model. The Dementia Inequalities model, similar to the original general rainbow model, categorises determinants of health and well-being in dementia into three layers: (1) Individual; (2) Social and community networks; and (3) Society and infrastructure. Each layer comprises of general determinants, which have been identified in the original model but also may be different in dementia, such as age (specifically referring to young- versus late-onset dementia) and ethnicity, as well as new dementia-specific determinants, such as rare dementia subtype, having an unpaid carer, and knowledge about dementia in the health and social care workforce. Each layer and its individual determinants are discussed referring to existing research and evidence syntheses in the field, arguing for the need of this new model. A total of 48 people with lived, caring, and professional experiences of dementia have been consulted in the process of the development of this model. The Dementia Inequalities model provides a coherent, evidence-based overview of inequalities in dementia diagnosis and care and can be used in health and social care, as well as in commissioning of care services, to support people living with dementia and their unpaid carers better and try and create more equity in diagnosis and care. [ABSTRACT FROM AUTHOR]

Comprehensive treatment is crucial for patients with a cleft lip/palate. While studies have investigated its impact on children's quality of life, few have examined the effects on primary caregivers. The aim of the study was to compare the quality of life of caregivers of children with cleft lip/palate to a control group at the National School for Higher Studies, National Autonomous University of Mexico, Guanajuato. A cross-sectional study was conducted at a teaching dental clinic of the National School of Higher Studies, National Autonomous University of Mexico, Guanajuato, México, from May to December 2021 involving 140 caregivers (70 in each group). The WHOQoL Bref instrument assessed the quality of life. In addition to the descriptive analysis, a binary logistic regression analysis was carried out, taking dichotomized reported quality of life as the dependent variable. Among the caregivers, 88.6% were female (p > 0.05), and 45 (64.8%) from the study group reported poor quality of life (p < 0.05). A multivariate analysis indicated that caring for a child with cleft lip/palate raised the likelihood of poor quality of life (p < 0.05). The findings emphasize the need for comprehensive support for both patients and caregivers, as their well-being affects patient outcomes. [ABSTRACT FROM AUTHOR]

As health impairment increases, older adults utilize care from different types of caregivers, but little is known about changes in the composition of care networks. We mapped the transitions between different care networks to gain insight into which people develop care networks that include informal, privately and publicly paid care. We used three waves (2012–2015–2018) of the Longitudinal Aging Study Amsterdam with 1413 Dutch community-dwelling adults, aged 64–100. Network types were identified using six types of caregivers: (1) co-resident, (2) non-co-resident children, (3) other kin, (4) neighbours/friends/acquaintances, (5) publicly paid, (6) privately paid, in a latent transition analysis with mortality and moving to a care facility as missing states. Five types of care networks were identified: (1) no care, (2) privately paid, (3) mixed informal, (4) mixed publicly paid, (5) co-resident. The co-resident network was the most unstable and had a high transition rate to nursing homes. Participants from the privately paid care network often transitioned to a mixed informal network and rarely transitioned to a mixed publicly paid network. Transitions out of the no-care network were mostly to the privately paid network. The two mixed care networks were the most stable. Transitions appeared to be most triggered by deteriorating health. Transitions to institutional care were most likely in the mixed informal, mixed publicly paid and the co-resident network. Thus, these networks appear to require additional support to facilitate ageing in place. [ABSTRACT FROM AUTHOR]

Understanding the risks in the months following hospital discharge is crucial for healthcare professionals to ensure the need for assistance is met. However, this may be challenging in the case of patients living with a major neurocognitive disorder (PLMNCD). Thus, it is important to incorporate patients' and caregivers' experiences of the transition from hospital to home in the risk assessment. This multiple case study comprised 7 PLMNCD, their caregivers, and occupational therapists. Fifty-four interviews, conducted just before, as well as 3 weeks and 3 to 6 months after hospital discharge, were qualitatively analyzed. Results revealed that risk management during the hospital-to-home transition is a dynamic process aimed at establishing a satisfactory routine while avoiding adverse events. This risk management process, which identifies challenges over time and between stakeholders, involves (a) determining the seriousness and acceptability of risks, (b) reflecting on ways to manage risks, and (c) taking steps to manage risks. This knowledge will help to provide more appropriate care and services that strike a balance between safety and autonomy. [ABSTRACT FROM AUTHOR]

Challenging behavior (CB) is a common occurrence in early childhood and frequently occurs in young children with disabilities. CB is also culturally perceived and includes differences in how caregivers understand and define the topography of CB. Despite the cultural interpretation, CB is known to impact the child and their family but there has been little exploration of what marginalized caregivers perceive as the impact of the CB that their young children with disabilities exhibit. We used semi-structured interviews to explore the perceptions of 24 caregivers, who identified as Black, Mexican American, and White, about the impact of their child's CB. Caregivers shared how the CB impacted themselves, their families, their child, and others. Although much of the impact was similar among caregivers, we discuss nuanced differences across ethnic groups. [ABSTRACT FROM AUTHOR]

The role of children's caregiving has received substantial attention in studies on care in old age. Previous research shows that children's care provision is strongly intertwined with both their individual and siblings' situation regarding employment and geographic parent-child distance. This study uses data from six waves of the Survey of Health, Ageing and Retirement in Europe (SHARE), taking a within-family approach, to examine how caregiving is (re-)distributed between siblings over time. The provision of continuous parent care is observed more frequent and volatile in European countries with a family-based care system. The results from family fixed-effects regression models demonstrate that children working less than siblings persist in caregiving more. Living closest to parents facilitates children to keep up care efforts, while changing to living closest enhances the start of parent care. This study suggests that geographic distance is vital in the long-term organization of parent care between siblings. [ABSTRACT FROM AUTHOR]

This study aimed to analyze the relationship between the caregiver burden, death obsessions, and somatic symptoms; and whether the death obsessions are playing a mediating role in the relationship between the caregiver burden and somatic symptoms. The study was done on the informal dementia caregivers residing in India. Three questionnaires in a google form were circulated. The correlational and mediation analysis revealed that there was a significant and positive correlation between the caregiver burden, death obsessions, and somatic symptoms. Further, the death obsessions significantly mediated the relationship between caregiver burden and somatic symptoms. [ABSTRACT FROM AUTHOR]

The integration of assisted dying into end-of-life care is raising reflections on bereavement. Patients and families may be faced with a choice between this option and natural death assisted by palliative care; a choice that may affect grief. Therefore, this study describes and compares grief experiences of individuals who have lost a loved one by medical assistance in dying or natural death with palliative care. A mixed design was used. Sixty bereaved individuals completed two grief questionnaires. The qualitative component consisted of 16 individual semi-structured interviews. We found no statistically significant differences between medically assisted and natural deaths, and scores did not suggest grief complications. Qualitative results are nuanced: positive and negative imprints may influence grief in both contexts. Hastened and natural deaths are death circumstances that seem to generally help ease mourning. However, they can still, in interaction with other risk factors, produce difficult experiences for some family caregivers. [ABSTRACT FROM AUTHOR]

Subjective caregiver burden is highly prevalent in family caregivers. Despite several studies investigating the relationship between subjective caregiver burden and coping strategies, results remain inconsistent. The aim of our study was to systematically review current literature on the relationship between subjective caregiver burden and coping in family carers of dependent adults and older people. A secondary objective was to analyse possible sources of heterogeneity in the estimated effect. The study design was a systematic review with meta‐analysis following Preferred Reporting Items for Systematic Reviews and Meta‐Analyses statement (PRISMA) guidelines. We searched several international databases (CINAHL, LILACS, PsycINFO and PubMed) up to February 2024. We performed several subgroup analyses to examine whether study design, methodological quality or care recipient dependency influenced results. Of the 1064 records identified in our search, a total of 80 studies met inclusion criteria. We found a significant association between greater use of dysfunctional coping and higher levels of subjective caregiver burden (r‾ $\overline{r}$ = 0.400; 95% CI = 0.315, 0.478); higher use of second‐order active coping was significantly associated with lower caregiver burden (r‾ $\overline{r}$ = −0.213; 95% CI = −0.316, −0.105). Problem‐focused coping showed no statistically significant association with levels of subjective burden; emotion‐focused coping was associated with caregiver burden only after controlling for confounding variables (r‾ $\overline{r}$ = −0.258; 95% CI = −0.441, −0.055); several individual strategies of this dimension such as acceptance (r‾ $\overline{r}$ = −0.135; 95% CI = −0.238, −0.028), positive reappraisal (r‾ $\overline{r}$ = −0.178; 95% CI = −0.255, −0.099) and religious coping (r‾ $\overline{r}$ = −0.083; 95% CI = −0.162, −0.002), were associated with lower burden. We found that several dimensions of coping strategies are significantly associated with levels of subjective caregiver burden experienced by carers. These results can inform future research evaluating the effectiveness of interventions aimed at improving carers' mental health. [ABSTRACT FROM AUTHOR]

The number of people providing informal care has increased considerably in the last years while, at the same time, about one in four Australians have financial stress problems. This study uses rich longitudinal data from the Household, Income and Labour Dynamics in Australia (HILDA) survey to estimate the effect of informal care on financial stress. To establish causality, we exploit a fixed effect‐instrumental variable approach to address omitted variable bias and reverse causality problems. Our findings show that informal caregiving increases financial stress between 9.9 and 14.5 percentage points. This finding is robust across a battery of quasi‐experimental methods. The effect of informal caregiving on financial stress is more pronounced among males, rural residents and those living in low socioeconomic areas. Our analyses further show that financial fragility and social isolation are important channels through which informal caregiving affects financial stress. [ABSTRACT FROM AUTHOR]

This study evaluated the diagnostic performances of a tablet-based hearing screening test by assisted-test and self-test modes. Measurements were performed with the SoTone tests in normal hearing and hearing-impaired adult participants using an Android tablet and calibrated Bluetooth headphones. The duration of assisted- and self-test modes were compared. Receiver operating characteristic (ROC) curves were plotted after calculations of sensitivity and specificity at 20, 30, and 35 dB HL cut-off values. 217 participants performed the tests. The effect of test mode (assisted versus self) was compared in a sample of 103 participants. Self-test duration (89 s) was significantly longer than the assisted-test duration (75 s) (p = 0.003, Wilcoxon test). For the 20, 30, and 35 dB HL cut-off values, sensitivity was between 92% and 96%, and specificity was between 79 and 90%. Concordance of results between assisted-test and self-test modes was excellent (Cohen's kappa = 0.81, p < 0.001). The SoTone hearing screening test is accurate for identifying the presence of a suspected hearing loss at 20 dB HL or more in adults. It can be used either in assisted-test or self-test modes. [ABSTRACT FROM AUTHOR]

To explore the goals, barriers, and facilitators set by caregivers of preschool-aged children to improve food parenting practices and household food environments. Secondary qualitative analysis of collaborative goal sheets completed during in-home and telephone visits as part of a home-based pilot intervention. Thirty-three Hispanic/Latinx caregivers, predominantly of low income. Patterns in goal content and anticipated barriers and facilitators. Thematic analysis of goal sheets with a mixed inductive-deductive approach. Almost half of the goals were to support a healthy environment (40.7%) by increasing the availability of healthy foods through food shopping and meal planning. Other goals were to increase structure (33.7%) by establishing food-related routines and decreasing distractions. Goals related to autonomy support (25.4%) included involving their children (eg, cooking together). Caregivers' perceived barriers encompass individual (eg, stress, lack of time), interpersonal (eg, other family members' eating behaviors), and environmental-level (eg, food availability) factors. Caregivers only identified facilitators at the individual and interpersonal levels (eg, motivation). Understanding goals, barriers, and facilitators can be used to tailor key messages to improve food parenting practices and children's diets. Future interventions can target broader environmental barriers while increasing awareness of individual, interpersonal, and environmental-level facilitators. [ABSTRACT FROM AUTHOR]

The increasing prevalence of mental illness has resulted in a growing burden on informal caregivers. Mindfulness‐based interventions, as a form of psychotherapy, have shown efficacy in alleviating psychological stress and enhancing emotional and physical well‐being. However, the utilisation of mindfulness‐based interventions for informal caregivers of individuals with mental illness remains limited. The aim of the meta‐analysis is to evaluate the impact of mindfulness‐based interventions on the mental health and well‐being among informal caregivers of people with mental illness. A comprehensive literature search was conducted across seven electronic databases (PubMed, Scopus, Web of Science, Cochrane Library, Embase, APA PsycINFO and CINAHL Ultimate) from the inception of these databases until 20 July 2023. Two authors independently screened the studies and extracted the relevant data. The meta‐analysis was performed by using Stata 12.0 software, and the effect sizes were calculated utilising standardised mean difference (SMD) along with their corresponding 95% confidence intervals (CI). The meta‐analysis included 13 studies with 1007 participants, and the results demonstrated that mindfulness‐based interventions were efficacious in reducing stress (SMD = −0.80, 95% CI [−1.33, −0.28], p = 0.003), depression (SMD = −0.43, 95% CI [−0.62, −0.24], p < 0.001) and caregiver burden (SMD = −0.21, 95% CI [−0.40, −0.01], p = 0.038), and enhancing the mindfulness level (SMD = 0.37, 95% CI [0.09, 0.65], P = 0.010) and quality of life (SMD = 0.22, 95% CI [0.04, 0.39], p = 0.015) among informal caregivers of people with mental illness, but not on anxiety reduction (SMD = −0.19, 95% CI [−0.49, 0.10], p = 0.198). Furthermore, future research should aim to employ more rigorous methodologies to confirm the effectiveness. [ABSTRACT FROM AUTHOR]

Advanced care planning (ACP) utilization remains very limited in rural communities compared to urban areas. ACP earlier in the disease trajectory is particularly important for people with dementia (PWD) due to its progressive nature affecting their decision-making ability. Considering the well-documented benefits of ACP in improving the quality of end-of-life (EOL) care, the rural vs. urban disparity may indicate poorer EOL quality for rural PWD. This study aimed to explore barriers and current resources for ACP of PWD from the perspectives of health or social service providers serving rural communities. Using a qualitative approach, semi-structured face-to-face interviews were conducted with 11 health or social service professionals serving older adults and their caregivers in rural Alabama. Thematic analysis revealed three major barriers: (1) lack of knowledge, (2) psychosocial barriers, and (3) limited access to healthcare. Participants also showed misconception that a lawyer or a notary is required for ACP. Two themes arose in the participants' recommendations to address the barriers: (1) providing ACP-relevant information and (2) addressing psychosocial stressors about ACP. This study highlighted an urgent need for social policy in ACP education for caregivers and service providers in rural settings. [ABSTRACT FROM AUTHOR]

Purpose: Empowering adolescents and young adult (AYA) patients to be involved in cancer responsibilities (e.g., remembering medications), as opposed to solely relying on caregivers, may have important short- and long-term benefits for development and disease management. This study explored perceptions of AYA engagement with cancer-related responsibilities and plans for transferring these responsibilities from caregivers to AYAs. Methods: A total of 30 AYA-caregiver dyads (including 11 early adolescents, 10 adolescents, and 9 young adults who were receiving chemotherapy and/or radiation) jointly completed a semi-structured interview. Interviews assessed the present allocation of cancer responsibilities within the family, how cancer responsibilities were divided this way, and prompted a dyadic discussion to draft a plan to transfer a responsibility to the AYA in the future. Directed content analysis techniques were used to identify and organize relevant themes. Results: Themes showed that (1) cancer responsibilities were initially assumed "naturally" by caregivers, without much formal discussion; (2) greater AYA involvement in cancer care reflected AYA (e.g., age, willingness) and caregiver factors (e.g., knowledge/skills, anxiety); (3) over time, dyads mutually prioritized AYA engagement with cancer care; and (4) the need for more proactive clinical support with transferring care tasks to AYAs. Discussion: Caregivers play a key role in managing cancer care with or for AYAs, with the allocation of these responsibilities being influenced by several factors that can shift over time. Dyads typically viewed the transfer process as important but desired more clinical support. This reflects a potential self-management care gap to address in future studies and dyadic interventions. [ABSTRACT FROM AUTHOR]

As individuals age, changes in their health status and functional level may begin to require caregiving from family caregivers. The role of caregiver can be taxing, a well-established phenomenon known as caregiver burden. While many studies have examined the factors within the caregiver that can be predictive of caregiver burden (or burnout), relatively few have examined the factors of the care recipient that predict caregiver burden. Using a sample of individuals enrolled in the Department of Veteran's Affairs Home Based Primary Care program, we collected data on demographic, psychological (i.e. mood and cognitive) and nursing (e.g. ADL/IADL, fall risk, etc.) factors. Using stepwise regression modeling, we discovered that only care recipient's age, IADL impairment, and gender predicted caregiver burden. We discuss possible causes of the relationships and implications for nursing and homecare practice. [ABSTRACT FROM AUTHOR]

BACKGROUND: Middle and high school students who are involved in caregiving for aging, chronically ill, and/or disabled family members report more learning challenges compared to their non‐caregiving peers. However, little is known about how many students miss school to take care of someone else, and which students are most likely to have this experience. Such knowledge could reveal an important, largely unrecognized reason for school absences and educational disparities. METHODS: Our research‐practice partnership surveyed middle‐and‐high schoolers across Rhode Island public schools in 2022. RESULTS: Among 55,746 students (45% White non‐Latinx; 21% Latinx; 45% girls), 13.80% reported they had missed school to take care of someone else, with up to 35% in some districts. Students who missed school for caregiving were disproportionately girls, non‐binary, transgender, or preferred not to report gender, older youth, and from historically marginalized racial and ethnic groups, and from urban districts. CONCLUSIONS: Children's experiences caregiving for others may be an important and overlooked contributor to absenteeism and achievement gaps, especially in urban areas. We suggest school policies to better serve these students. [ABSTRACT FROM AUTHOR]

BACKGROUND: In the postoperative period, patients mainly rely on caregivers, who experience their own physical and mental fatigue. Caregiver fatigue may affect patient outcomes. OBJECTIVES: This study explored the fatigue status and influencing factors of primary caregivers of patients after liver cancer surgery. METHODS: A baseline information questionnaire, the Fatigue Scale-14, and the Barthel Index were used to investigate the self-care ability and fatigue status of 191 primary caregivers of patients with hepatic carcinoma who had had surgery. FINDINGS: The postoperative hospitalization time and self-care level of patients, whether the primary caregiver had health insurance, subjective feelings of fatigue, the perception that health was affected, and the patients' desired level of postoperative care were correlated with the occurrence of primary caregiver fatigue. [ABSTRACT FROM AUTHOR]