Maternal empowerment, feeding knowledge, and infant nutrition: Evidence from rural China.

Background: Maternal empowerment - the capacity to make decisions within households - is linked to better child feeding and nutritional outcomes, but few studies have considered the mediating role of caregiver knowledge. Further, existing literature centres primarily on the husband-wife dyad while overlooking grandmothers as important childcare decision-makers. Methods: We collected primary data through household surveys in 2019 and 2021 from 1190 households with infants zero to six months living in rural western China. We identified the primary and secondary caregivers for each infant and assessed their feeding knowledge and practices, as well as infant nutritional status. We constructed a maternal empowerment index using a seven-item decision-making questionnaire and examined the relationship between maternal empowerment in childcare and household decisions, caregivers' feeding knowledge, and infant feeding practices and nutritional outcomes. Results: Mothers had significantly higher levels of feeding knowledge than secondary caregivers (most were grandmothers, 72.7%), with average knowledge scores of 5.4 vs. 4.1, respectively, out of 9. Mothers and secondary caregivers with higher levels of feeding knowledge had significantly higher exclusive breastfeeding rates by 13-15 percentage points (P < 0.01) and 11-13 percentage points (P < 0.01), respectively. The knowledge of secondary caregivers was even more strongly associated with not feeding formula (15 percentage points, P < 0.01). Mothers empowered to make childcare decisions were more likely to exclusively breastfeed (12-13 percentage points, P < 0.01), less likely to formula feed (9-10 percentage points, P < 0.05), and more likely to have children with higher Z-scores for length-for-age (0.32-0.33, P < 0.01) and weight-for-age (0.24-0.25, P < 0.05). Effects remained after controlling for maternal feeding knowledge. Conclusions: While mothers' and grandmothers' feeding knowledge was both important for optimal infant feeding, grandmothers' knowledge was particularly critical for practicing exclusive breastfeeding. Given the disparity in feeding knowledge between the two caregivers, our study further shows that mothers empowered in childcare decision-making were more likely to exclusively breastfeed their infants. This implies that some mothers with adequate knowledge may not practice optimal feeding because of lower decision-making power. Overall, our study highlights the role of secondary caregivers (grandmothers) in infant care and suggests that future child nutritional interventions may benefit from involving secondary caregivers (grandmothers). Registration: Parent trial registration: ISRCTN16800789.

Cohort profile: the Adverse Childhood Experiences cohort of the Malawi Longitudinal Study of Families and Health.

PURPOSE: The Adverse Childhood Experiences (ACE) cohort of the Malawi Longitudinal Study of Families and Health (MLSFH-ACE) is a study of adolescents surveyed during 2017-2021. It provides an important opportunity to examine the longitudinal impact of ACEs on health and development across the early life course. The MLSFH-ACE cohort provides rich data on adolescents, their children and adult caregivers in a low-income, high-HIV-prevalence context in sub-Saharan Africa (SSA). PARTICIPANTS: The MLSFH-ACE cohort is a population-based study of adolescents living in three districts in rural Malawi. Wave 1 enrolment took place in 2017-2018 and included 2061 adolescents aged 10-16 years and 1438 caregivers. Wave 2 took place in 2021 and included data on 1878 adolescents and 208 offspring. Survey instruments captured ACEs during childhood and adolescence, HIV-related behavioural risk, mental and physical health, cognitive development and education, intimate partner violence (IPV), marriage and aspirations, early transitions to adulthood and protective factors. Biological indicators included HIV, herpes simplex virus and anthropometric measurements. FINDINGS TO DATE: Key findings include a high prevalence of ACEs among adolescents in Malawi, a low incidence of HIV and positive associations between ACE scores and composite HIV risk scores. There were also strong associations between ACEs and both IPV victimisation and perpetration. FUTURE PLANS: MLSFH-ACE data will be publicly released and will provide a wealth of information on ACEs and adolescent outcomes in low-income, HIV-endemic SSA contexts. Future expansions of the cohort are planned to capture data during early adulthood.

Theoretically Based Factors Associated With Stroke Family Caregiver Health.

PURPOSE: Most persons who have had strokes are cared for at home by family members-many of whom experience depressive symptoms and quality of life changes as a result of providing care. The objective of this study is to determine theoretically based factors associated with unhealthy days in stroke family caregivers. RESEARCH DESIGN AND METHODS: Secondary data analysis was conducted using baseline data from a large randomized controlled clinical trial testing the Telephone Assessment and Skill-Building Kit program with 254 family caregivers of persons who have had strokes. Guided by a conceptual model derived from Lazarus' transactional approach to stress, data were analyzed using multiple regression with unhealthy days as the dependent variable and theoretically based factors as independent variables. RESULTS: Caregivers were mostly female (78%), White (71%), spouses (47%), or adult children (29%). Caregivers reported nine unhealthy days on average within the past month. A total of 37.8% of the variance in unhealthy days was explained by caregiver task difficulty, level of optimism, threat appraisal, depressive symptoms, and life changes with depressive symptoms being the strongest individual predictor because of shared variance. CLINICAL RELEVANCE: Unhealthy days is an important part of stroke family caregiver health. Factors associated with unhealthy days in this study provide areas to consider in future intervention development.

'Tausi Feagaiga: A Project to Train Caregivers and Empower the American Samoan Community.

The 'Tausi Feagaiga (Covenant Keeper) project was a partnership to support the traditional values of tausi matua (caring for one's elders). The partners included a non-governmental organization (Pacific Youth and Community Development), a faith-based organization (Roman Catholic Diocese of Samoa-Pago Pago), and an institute of higher education (University of Hawai'i John A. Burns School of Medicine). The project was created to address the lack of community-based health care such as home health or hospice, and families needing to work outside the home. A culturally based caregiving curriculum was developed to educate caregivers and improve their knowledge and skills. Using a train-the-trainer model, 125 caregivers were trained in family caregiving from 2016-2020. Training was conducted through an intensive workshop followed by practicum at Hope House, the Catholic Diocese home for the aged. Participants who expressed a willingness and competency were mentored to be trainers to continue the 'Tausi Feagaiga project. The mean self-rated confidence in caregiving improved significantly from 3.17 ± 1.02 (mean SD) pre workshop to 3.53 ± 0.71 post workshop (P = .001). Competence in geriatric syndromes was improved from 18.04 ± 4.27 to 21.31 ± 4.30 after attending the workshop (P < .001) and the feedback was extremely positive. Technical assistance was provided to obtain funding through American Samoa Medicaid State Agency to improve the existing infrastructure of Hope House, obtain much needed supplies, and increase ability to hire the participants. 'Tausi Feagaiga positively impacted the lives of the residents of Hope House, the course participants, the elders in the community, and those who care for them.

Qualitative Study of Food Insecurity in Hospitalized Pediatric Patients during the COVID-19 Pandemic.

OBJECTIVES: Food insecurity (FI) is defined as limited or uncertain access to sufficient food for a healthy and active lifestyle. Our objective was to explore how the coronavirus disease 2019 (COVID-19) pandemic affected the FI status of pediatric patients and their families through interviewing caregivers who screen positive for FI. METHODS: Caregivers of all hospitalized patients at a tertiary children's hospital who screen positive for FI with a two-question screening tool were approached about enrolling in the study. Those who consented completed a presurvey and participated in a semistructured individual interview. Interviews were audio recorded, transcribed, and analyzed according to the guidelines of thematic analysis using NVivo 12. RESULTS: Interviews were conducted with 15 caregivers between July 2021 and January 2022. Caregivers were 100% female and 80% Black, 13% White, and 7% Hispanic/Latinx, with a mean age of 33 years. Seventy-three percent did not experience FI until the COVID-19 pandemic. Themes include lost wages, mothers forced out of the workforce due to childcare limitations, inflation and shortages of goods, increased stress/anxiety for caregivers and children, the centrality of extended family support, and the necessity/inadequacy of federal food programs. CONCLUSIONS: The COVID-19 pandemic impacted unemployment and poverty and consequently exacerbated FI. Our findings point to the need to focus on proximal societal solutions, such as federal policies aimed at food assistance and childcare. Understanding the challenges related to FI that caregivers and patients experience can improve screening, support, and treatment of patients presenting for care and inform the design of necessary interventions for individuals and communities beyond COVID-19.

Influencing factors of home hospice care needs of family caregivers of the older adult with chronic diseases at the end of life in China: a cross-sectional study.

Introduction: With increased life expectancy in the Chinese population coupled with chronic disease the care needs of people at the end of life are attracting much attention. Home hospice care can help the dying older adult achieve comfort and maintain their dignity at home. However, dying at home means great responsibility and challenge for family caregivers, and there are many unmet needs. The study aimed to investigate the home hospice care needs of family caregivers of older adult people with chronic diseases at the end of life in China, and to analyze the influencing factors of home hospice care needs of caregivers. Methods: In this cross-sectional study, from May to September 2023, 4 community health service centers were selected by stratified sampling from seven administrative districts in Jinzhou City, Liaoning Province, where home hospice care was piloted. Then 224 family caregivers were selected from the communities of seven community service centers by simple random sampling method. A general information questionnaire and the home hospice care needs questionnaire developed by our research group were used to investigate. Univariate analysis was used to compare the differences in the scores of different characteristics, and the factors with significant differences were selected for multivariate linear regression analysis to determine the final influencing factors. Results: The total score of hospice care needs of family caregivers was 121.61 ± 15.24, among which the end-of-life knowledge need dimension score was 24.04 ± 2.71, the highest score index was 80.13%, while the symptom control need score was 15.58 ± 3.39, the lowest score index was 62.32%. In addition, Caregivers with caregiving experience, dying older adult with longer disease duration, and dying older adult with higher levels of education were the factors influencing the total need for home hospice care among family caregivers, with a variance explained of 22.7%. Discussion: The needs of family caregivers of the terminally ill older adult are high, and healthcare professionals should implement services to meet their multidimensional needs and improve the quality of care according to the factors affecting their needs.

Patient and caregiver characteristics associated with differential use of primary care for children and young people in the UK: a scoping review.

OBJECTIVE: To systematically map evidence to answer the research question: What is the relationship between the characteristics of children and young people (CYP) or their caregivers and primary care service use in the UK, taking into account underlying healthcare needs? DESIGN: Scoping review. SETTING: Primary care. ELIGIBILITY CRITERIA: English-language quantitative or mixed-methods studies published between 2012 and 2022. DATA SOURCES: Medline, Embase, Scopus and Web of Science Social Sciences Citation Index, and grey literature. RESULTS: 22 eligible studies were identified, covering general practice (n=14), dental health (n=4), child mental health (MN) services (n=3) and immunisation (n=1). Only eight studies (36%) controlled for variables associated with healthcare need (eg, age, birth weight and long-term conditions). In these, evidence of horizontal inequity in primary care use was reported for CYP living in deprived areas in England, with and without complex needs. Horizontal inequity was also identified in primary care MN referrals for CYP in England identifying as mixed-race, Asian or black ethnicity, compared with their white British peers. No evidence of horizontal inequity was observed, however, in primary care use for CYP in England exposed to parental depression, or for CYP children from low-income households in Scotland. Increasing CYP's age was associated with decreasing primary care use across included studies. No studies were found regarding CYP from Gypsy or Traveller communities, children in care, or those with disabilities or special educational needs. CONCLUSIONS: There is evidence that socioeconomic factors impact on CYP's primary care use, in particular age, ethnicity and deprivation. However, better quality evidence is required to evaluate horizontal inequity in use and address knowledge gaps regarding primary care use for vulnerable CYP populations and the impact of policy and practice related 'supply side' of primary care.

Technology Use Among Older Adults and Their Caregivers: Cross-Sectional Survey Study.

Background: Informal caregivers are called upon to provide substantial care, but more needs to be known about technology use among older adult and caregiver dyads. Objective: This study described technology use among older adults and their caregivers, explored potential correlates of technology use, and highlighted implications for practice. Methods: A cross-sectional survey was conducted among unpaid caregivers of older adults (n=486). Primary outcomes were self-reported technology (devices and functions) use among caregivers and their oldest care recipient. The concordance of technology use among caregivers and care recipients was also examined. Multivariable regression models were conducted separately for caregivers and care recipients. Results: Greater proportions of caregivers used all examined technologies, except for the medication alerts or tracking function, than care recipients. Caregivers used an average of 3.4 devices and 4.2 functions, compared to 1.8 devices and 1.6 functions used by their care recipients. Among caregivers, younger age, higher income, and higher education were associated with more technology use (P<.05). Among care recipients, younger age, not having cognitive dysfunction, and caregiver's technology use were associated with more technology use (P<.05). Conclusions: Understanding technology use patterns and device adoption across diverse caregiver and care recipient populations is increasingly important for enhancing geriatric care. Findings can guide recommendations about appropriate technology interventions and help providers communicate and share information more effectively with patients and their caregivers.

Older adults preferences for long-term caregivers in China: a discrete choice experiment.

OBJECTIVE: Understanding the preferences of old-age adults for their long-term caregivers can improve person-centred health care and the quality of long-term care (LTC). This study examines Chinese older adults' preferences for long-term caregivers. STUDY DESIGN: This is a cross-sectional study. METHODS: A national representative discrete choice experiment (DCE) surveyed 2031 adults aged 50-70 across 12 provinces in China. Each DCE scenario described five attributes: type of caregivers, place of LTC, contents of LTC, out-of-pocket payments, and quality of life (QoL). Preferences and the marginal willingness to pay (WTP) were derived using mixed-logit and latent class models. RESULTS: Older adults displayed higher preferences for long-term caregivers who improve their QoL, incur lower out-of-pocket payments, and provide medical LTC services at home, with the maximum WTP of $22.832 per month. QoL was rated as the most important LTC factor, followed by the place of LTC and the type of caregivers. When the level of QoL improved from poor to good, respondents would be willing to pay $18.375 per month more (95% confidence interval: 16.858 to 20.137), and the uptake rate increased by 76.47%. There was preference heterogeneity among older people with different sex, education, family size, and knowledge of LTC insurance. CONCLUSION: QoL was the most important factor in older Chinese adults' preference for caregivers. Home care and medical care from formal caregivers was preferred by older adults. We recommend training family caregivers, raising older people's awareness of LTC insurance, and guiding policymakers in developing people-oriented LTC and a multi-level LTC system.

Healthy Life Habits in Caregivers of Children in Vulnerable Populations: A Cluster Analysis.

Intervention programs aimed at mitigating the effects of chronic noncommunicable disease (CNDs) focus on promoting healthy lifestyle habits (HLH), especially in the early stages of life. Because of this, different typologies of caregivers have been identified according to HLH during middle childhood and adolescence. However, the available studies have focused on aspects such as nutrition, physical activity, and rest, ignoring other HLHs that are equally important for children's well-being. Likewise, few studies address HLH during the first five years of life and how caregivers affect children's health. In a sample of 544 caregivers of children aged zero to five years from low-income Colombian communities, we established a typology of attitudes toward different HLHs. The results indicate the presence of three clusters that grouped caregivers with (1) positive attitudes toward all HLHs, (2) toward some HLHs, and (3) relatively low positive attitudes toward all HLHs. Membership in clusters with less positive attitudes toward HLHs was also found to be associated with low educational levels and living in rural areas. This study detected profiles of caregivers who may have unhealthy lifestyles, so the results would allow social workers to design differential interventions on HLHs in non-industrialized countries.

The Prevalence of Caregiving among Young People.

With the increasing number of people with chronic diseases and disabilities, the number of family members as caregivers have also been growing. Despite the attention paid to caregiving in recent years, little is known about caregiving among young people, particularly its global prevalence. The lack of information has important implications for health policy and management, resulting in the inability to form appropriate evidence-based policies and managerial decision making. This study aims to derive an estimate of the prevalence of caregiving among young people through a systematic review of the current literature. The results of this study revealed a prevalence of caregiving among younger adolescents of between 1.1% (1.06-1.14%) and 12.0% (11.02-12.98%). However, the assessment of caregiving varies across studies, and all were conducted in developed countries. These results provide information on the burden of caregiving in young people and reveal the lack of global information, calling for more research on and attention to this specific population.

Barriers to equitable healthcare services for under-five children in Ethiopia: a qualitative exploratory study.

BACKGROUND: Disparities in child healthcare service utilization are unacceptably high in Ethiopia. Nevertheless, little is known about underlying barriers to accessing child health services, especially among low socioeconomic subgroups and in remote areas. This study aims to identify barriers to equity in the use of child healthcare services in Ethiopia. METHODS: Data were obtained from 20 key- informant interviews (KII) and 6 focus group discussions (FGD) with mothers and care givers. This study was conducted in Oromia Region, Arsi Zone, Zuway Dugda District from June 1-30, 2023. The study participants for this research were selected purposively. The information was collected based on the principle of saturation after sixteen consecutives interview were conducted. Both KII and FGD were audio-recorded and complementary notes were taken to record observations about the participants' comments and their interactions. Each interview and FGD data were transcribed word-for-word in the local Afaan Oromo and Amaharic languages and then translated to English language. Finally, the data were analyzed thematically using NVivo 14 software and narrated in the linked pattern of child health service utilization. RESULTS: This study identified six major themes which emerged as barriers to healthcare utilization equity for caregivers and their -under-five children. Barriers related to equity in low level of awareness regarding need, low socioeconomic status, geographical inaccessibility, barriers related to deficient healthcare system, community perception and cultural restrictions, and barriers of equity related to political instability and conflict. The most commonly recognized barriers of equity at the community level were political instability, conflict, and a tremendous distance to a health facility. Transportation challenges, poor functional services, closure of the health facility in working hours, and lack of proper planning to address the marginalized populations were identified barriers of equity at organizational or policy level. CONCLUSION: This study showed that inequity in child healthcare utilization is an important challenge confronting Ethiopia. To achieve equity, policy makers and planners need to change health policy and structure to be pro-poor. It is also necessary to improve the healthcare system to increase service utilization and access for impoverished women, individuals with lower levels of education, and residents of isolated rural areas. Furthermore, context specific information pertaining to cultural barriers and political ecology are required.

Association between quality of life and burden of cancer caregivers: An example in a low and middle income country.

OBJECTIVE: Limited knowledge on burden and quality of life (QoL) among cancer caregivers is available in low and middle income countries. This study aims to investigate the QoL, levels of burden, and their associations among Vietnamese cancer caregivers. METHODS: This study was conducted across three hospitals in Vietnam. 348 caregivers were recruited from January to June 2021. Data were collected by using socio-demographic questionnaires, the Zarit Burden Interview scale, and Caregiver Qol Cancer. The association between QoL and burden was analyzed by using multivariate linear regression. RESULTS: Older age (p = 0.03), employed (p = 0.01), and care more than 40 h (p = 0.007) were associated with a higher burden, respectively. QoL of financial concern had the lowest score (mean = 48.03, SD = 28.87), compared to the other subscale. Caregivers who had pre-existing health conditions, unstable work, spent more than 40 h per week, and took care dependent cancer patients were associated with a lower overall QoL score. Comparing to caregivers of no burden, those of mild burden had a lower QoL score by 10.70; while those of mild severe burden had the worse QoL (lower by 23.80 scores). CONCLUSIONS: Perceptional burden among caregivers is associated with QoL. Further policies are recommended to protect cancer caregivers, to alleviate the caregiving burden, and thus to improve the overall QoL.

Predictors of Burden for First-Ever Stroke Survivor's Long-Term Caregivers: A Study of KOSCO.

Long-term changes in caregiver burden should be clarified considering that extended post-stroke disability can increase caregiver stress. We assessed long-term changes in caregiver burden severity and its predictors. This study was a retrospective analysis of the Korean Stroke Cohort for Functioning and Rehabilitation. Patients with an acute first-ever stroke were enrolled from August 2012 to May 2015. Data were collected at 6 months and 6 years after stroke onset. The caregiver burden was measured with a subjective caregiver burden questionnaire based on the Korean version of the Caregiver Burden Inventory. The caregivers' characteristics and patients' clinical and functional status were also examined at each follow-up. A high caregiver burden, which suggests a risk of burnout, was reported by 37.9% and 51.7% of caregivers at 6 months and 6 years post-stroke, respectively. Both the caregiver burden total score and proportion of caregivers at risk of burnout did not decrease between 6 months and 6 years. The patients' disability (OR = 11.60; 95% CI 1.58-85.08; p = 0.016), caregivers' self-rated stress (OR = 0.03; 95% CI 0.00-0.47; p = 0.013), and caregivers' quality of life (OR = 0.76; 95% CI 0.59-0.99; p = 0.042) were burden predictors at 6 months. At 6 years, only the patients' disability (OR = 5.88; 95% CI 2.19-15.82; p < 0.001) and caregivers' psychosocial stress (OR = 1.26; 95% CI 1.10-1.44; p = 0.001) showed significance. Nearly half of the caregivers were at risk of burnout, which lasted for 6 years after stroke onset. The patients' disability and caregivers' stress were burden predictors in both subacute and chronic phases of stroke. The findings suggest that consistent interventions, such as emotional support or counseling on stress relief strategies for caregivers of stroke survivors, may reduce caregiver burden. Further research is needed to establish specific strategies appropriate for Korean caregivers to alleviate their burden in caring for stroke patients.

Patients' and Caregivers' Experiences Navigating the Burden of Atopic Dermatitis in Argentina.

Background and Objectives: Little is known about patients' and caregivers' experiences with atopic dermatitis (AD) in Argentina, so a survey was administered to learn more. Materials and Methods: A 53-item anonymous survey was administered in Spanish to adult AD patients (n = 334) and caregivers (n = 339) of pediatric AD patients in Argentina (total n = 673). Demographics, healthcare provider information, financial burden, disease severity, disease burden, level of disease-specific education, and experience with shared physician/patient decision making were collected. Linear and logistic regression models were used for statistical comparisons. Results: Survey respondents were overwhelmingly female (90.8%), as was the overall patient population (72.8%). Patients were seen mostly by healthcare specialists (66.8% dermatologists, 13.5% pediatricians, 7.7% allergists, and 7.2% general practitioners). Only 2.8% of respondents reported no symptoms, while 33.3%, 52.4%, and 11.5% reported mild, moderate, and severe AD disease, respectively. Anxiety/depression and pain/discomfort were the most impactful on respondents' quality of life. Caregivers of children with moderate to severe AD and adult patients with severe AD reported a significant financial burden, including using savings or not purchasing food or other essentials to afford medical care. Few people reported receiving disease-specific education or having their own treatment priorities taken into consideration. For adult patients, receiving disease education and being asked about treatment priorities were associated with higher treatment satisfaction and AD control. Discussion: Mental health, pain/discomfort, and financial worries are the most important burdens for adult AD patients and caregivers of children with AD in Argentina. We recommend prioritizing disease-specific education and shared decision making to improve AD care in Argentina.

The association between loneliness with health service use and quality of life among informal carers in Australia.

OBJECTIVE: The demanding nature of caregiving and limited social support can lead to informal carers experiencing loneliness, which can impact their well-being and overall health service use (HSU). The study aims to examine the association between loneliness with HSU and Health state utility values among informal carers in Australia. METHODS: Data were derived from three waves (2009, 2013, and 2017) of the nationally representative longitudinal Household Income and Labour Dynamics of Australia (HILDA) survey, focusing on adult informal carers. Outcome measures included visits to the General Practitioner, the number of hospital admissions, and the SF-6D score. Generalized Estimating Equations (GEE) analysis was conducted to explore the associations between loneliness and HSU, as well as loneliness and utility values (based on SF-6D) while adjusting for age, sex, education, marital status, income, and physical/mental health conditions. RESULTS: After controlling for covariates, lonely carers reported lower utility values (IRR = 0.91, 95%CI [0.89, 0.93], p < 0.001) compared to non-lonely carers. Lonely carers reported a higher number of GP visits (IRR = 1.18, 95% CI [1.04, 1.36], p < 0.05) as well as a higher likelihood of visiting specialists (AOR = 1.31, p = 0.046) and hospital doctors (AOR = 1.42, p = 0.013) compared to the non-lonely carers. CONCLUSIONS: The findings of this study highlight the relationship between loneliness on both healthcare utilization and carers' overall well-being. Addressing loneliness through targeted interventions and social support systems can help improve health outcomes and potentially reduce the overall healthcare costs among informal carers in Australia.

Potential parental determinants of the pace of evidence-based practice change in children's mental health care.

BACKGROUND: Strength of evidence is key to advancing children's mental health care but may be inadequate for driving practice change. The Designing for Accelerated Translation (DART) framework proposes a multifaceted approach: pace of implementation as a function of evidence of effectiveness, demand for the intervention, sum of risks, and costs. To inform empirical applications of DART, we solicited caregiver preferences on key elements. METHOD: In March-April 2022, we fielded a population-representative online survey in Illinois households (caregivers N = 1,326) with ≥1 child <8 years old. Six hypothetical scenarios based on the DART framework were used to elucidate caregivers' preferences on a 0-10 scale (0 = never; 10 = as soon as possible) for pace of implementation of a family-based program to address mental health concerns. RESULTS: Caregivers' pace preference scores varied significantly for each scenario. The highest mean score (7.28, 95% confidence interval [95% CI: 7.06, 7.50]) was for a scenario in which the child's provider thinks the program would be helpful (effectiveness) and the caregiver believes the program is needed (demand). In contrast, the lowest mean score (5.13, 95% CI [4.91, 5.36]) was for a scenario in which online information implies the program would be helpful (effectiveness) and the parent is concerned about the program's financial costs (cost). Caregivers' pace preference scores did not vary consistently by sociodemographic factors. CONCLUSION: In this empirical exploration of the DART framework, factors such as demand, cost, and risk, in combination with evidence of effectiveness, may influence caregivers' preferred pace of implementation for children's mental health interventions. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Burden of Wilson Disease among patients and care partners in the United States: results from a cross-sectional survey.

OBJECTIVE: This study assessed the burden of Wilson Disease (WD) among patients and care partners (WD-CPs) in the US and compared it to a US general population of adults (GPs) and care partners (GP-CPs). METHODS: This cross-sectional, self-reported survey included patients with WD and WD-CPs aged ≥18 years recruited through the Wilson Disease Association (WDA), while data for GPs and GP-CPs were obtained from the 2022 National Health and Wellness Survey. GPs and GP-CPs were propensity score matched (3:1) with WD patients and WD-CPs for demographics and health characteristics. Bivariate analysis evaluated differences in comorbidity burden and health-related outcomes of the WD cohorts compared to matched GP cohorts. RESULTS: Thirty-seven patients with WD and 53 WD-CPs completed the survey. Most patients reported some treatment burden (73.3%), experienced sleep problems (60%), and visited a healthcare provider (HCP) in the past 6 months (91.9%). Compared with matched GPs, patients with WD had a significantly higher mortality risk (p < .001) and reported greater rates of chronic liver disease, cirrhosis (both, p < .001), migraines (p = .032), non-alcoholic steatohepatitis (p = .004), sleep problems (p = .009) and HCP visits (p = .002). Most WD-CPs (75.5%) reported high burden of caring (mean ZBI-12 score, 26.5) and more negative impact on esteem than GP-CPs. CONCLUSION: This study highlights the burden of WD experienced by patients and WD-CPs, with patients experiencing high treatment burden, comorbidity burden and healthcare resource utilization, and WD-CPs experiencing high impact of caring, including impact on employment and self-esteem.

Wilson Disease (WD) is a rare genetic disorder that results from copper building up in the liver and the central nervous system. The management of WD has been consistent for the past 50 years. We surveyed patients with WD and family members of patients with WD ("care partners," hereby referred to as WD-CPs) residing in the US, to understand the burden of WD. We also used data from the 2022 National Health and Wellness Survey to compare patients with and WD-CPs to a sample of adults and care partners of adults in the general population (hereby referred to as GP and GP-CPs). The study found that the majority of the patients with WD reported some treatment burden (73.3%), experienced sleep problems (60.0%), and visited a healthcare provider (HCP) in the past 6 months (91.9%). Compared to GPs, patients with WD had a significantly higher risk of dying in the next 10 years and reported greater rates of other health conditions (chronic liver disease, cirrhosis, migraines, and non-alcoholic steatohepatitis), sleep problems, and visits to healthcare providers in the last 6 months. The majority of WD-CPs (75.5%) reported high burden of caring and more negative impact on their self-esteem than GP-CPs. Overall, this study highlights the burden of WD and suggests the need for more effective treatments that can reduce this burden.

Assessing Regional Weather's Impact on Spinal Cord Injury Survivors, Caregivers, and General Public in Miami, Florida.

(1) Background: Climate change is increasing the already frequent diverse extreme weather events (EWE) across geographic locations, directly and indirectly impacting human health. However, current ongoing research fails to address the magnitude of these indirect impacts, including healthcare access. Vulnerable populations such as persons with spinal cord injury (pSCI) face added physiologic burden such as thermoregulation or mobility challenges like closure of public transportation. Our exploratory research assessed commute and transport to healthcare facilities as well as the knowledge, attitudes and behaviors (KAB) of pSCI regarding EWE and climate change when compared to pSCI caregivers (CG) and the general public (GP). (2) Methods: A KAB survey was employed to conduct a cross-sectional assessment of pSCI, CG, and GP in Miami from October through November 2019 using snowball sampling. Descriptive and logistic regression statistical analyses were used. (3) Results: Of 65 eligible survey respondents, 27 (41.5%) were pSCI, 11 (17%) CG, and 27 (41.5%) GP. Overall, pSCI reported EWE, particularly flooding and heavy rain, affecting their daily activities including healthcare appointments, more frequently than CG or GP. The overall models for logistic regression looking at commute to and attendance of healthcare appointments were statistically significant. pSCI self-report being less vulnerable than others, and a large proportion of each group was not fully convinced climate change is happening. (4) Conclusions: This study provided insight to the KAB of 3 population subgroups in Miami, Florida. pSCI are significantly more vulnerable to the effects of regional weather events yet exhibit disproportionate self-perception of their vulnerability. Continued and more comprehensive research is needed to characterize the barriers that vulnerable populations face during weather events.