Family Burden Research Articles

Family-Centered Care Experiences in Elderly with Chronic Diseases in Communities: Qualitative Study of Patients, Families, Nurses, and Volunteers.

The family, at community, must be an important part of elderly care. However, most of the elderly experience a decrease in psychological well-being and quality of life. This is not in accordance with the concept of the family-centered care (FCC) model and can endanger the continuity of the elderly with chronic illnesses. The aim of this study was to explore experience of FCC among patients with chronic illness, nurses, families, and volunteers. This study examines the contextual-based FCC model qualitatively. In-depth interviews and focus group discussions were conducted by 12 elderly people, 3 nurses, 10 family members, and 3 volunteers. In total, 36 people, where several were FGD participants, were also interviewed in depth. Data were analyzed using thematic analysis, with codes organized into larger themes. In total, 36 interviews and FGDs were conducted. The concept of information interaction, the phenomenon of emotional interaction, the practical interaction, and various factors that can either facilitate or impede interaction, were considered the four significant themes. FCC acceptance is found in interactions between parents, nurses, family, and volunteers who are not optimistic. Lack of communication and collaboration was noted between community nurses and volunteers. Offer a new perspective on developing and implementing interventions that facilitate positive interactions, reduce family burdens, provide high-quality treatment for parents with chronic diseases, and improve the quality of care for those with advanced chronic conditions. These insights provide a fresh perspective on how to develop and implement effective interventions in this context. It is recommended that future research should employ multiple methodologies to investigate FCC across diverse health practices for the elderly population.

Barriers to Women’s Gaining a Role in Grassroots Government: The Case of a Questionnaire Survey of Grassroots Civil Servants in China

This dissertation investigated the barriers faced by female civil servants in grassroots government in China when it comes to work and promotion. On the basis of the existing literature, three research questions are posed in this dissertation:1) Do women face barriers when seeking access to local government? If so, what are these barriers? 2) Does gender socialisation and gender norms have an impact on women’s representation in government? 3) What are the career goals of women entering government at the primary level? To address these research questions, this dissertation used mixed methods research methodology, which employed a non-quantitative questionnaire to collect data. To ensure the accuracy of the final questionnaire, this dissertation conducted a Pilot Study to get feedback from the target people. According to findings and discussion, this dissertation found that traditional Chinese gender norms and gender-based discrimination, including internalised sexism constrain the job development of female civil servants at the primary level. It also found that the weakness of China’s elderly care facilities makes daughters-in-law the primary bearers of elderly care responsibilities, which can place additional family burdens on grassroots women and discourage their job advancement. The study further found that the patriarchal dominant ‘guanxi’ culture is unfair to the development of female civil servants at the grassroots level. This dissertation mainly reveals the restrictions and barriers imposed on women under the patriarchal culture.

The Burden of Caregiving and Quality of Life of Family Caregivers of Bipolar Patients: A Cross-sectional Study

Abstract Background: Caring for patients with severe mental illness could be stressful. Information regarding the burden and quality of life (QOL) of the family caregivers of patients with bipolar affective disorder (BD) is scant from India. It was intended to study the burden and QOL of the caregivers of patients with BD and their association with sociodemographic factors. Materials and Methods: It was a cross-sectional study in a tertiary-level psychiatric hospital. Caregivers (n = 60) of patients with BD were assessed using the Family Burden Interview Schedule and World Health Organization QOL-BREF, along with their sociodemographic data. Results: Caregivers reported considerable burden in various areas, and a large proportion (71.7%) had higher burden and this group had significantly lower QOL in all domains. Burden and QOL had variations among demographic groups. There was no difference in the burden reported by male and female caregivers, however, the former appeared to have better QOL. Caregivers with the lowest income had considerable burden and poor QOL, besides the caregivers with lower education and from nuclear families. Conclusions: Family caregivers of patients with BD experienced considerable burden and had poorer QOL. Caregivers with lower education, the lowest income, and nuclear families had greater challenges. Assessment of caregivers’ needs and provision of appropriate support require prioritization.

Caregiver burden in families of children with juvenile idiopathic arthritis in India.

Juvenile Idiopathic Arthritis (JIA) causes caregiver burden on families with children affected with it. Our study aimed to explore this multifaceted burden in the Indian context. In this cross-sectional study, we administered the Hindi translated CAREGIVER questionnaire to adult caregivers in the families of JIA patients ≤ 18years. The responses to the 28 items were used to calculate the burden scores in various dimensions. The relationship of the global burden scores with demographic and socioeconomic factors were analysed. Non parametric tests were used. Two hundred twenty-one caregivers participated with a median age of 39years (IQR 32-45). This included 116 fathers, 50 mothers, 32 brothers, 18 uncles, three grandfathers, one sister, and one grandmother. The JIA patients had a median age of 15 (12-17) years, and the male-to-female ratio was 3.2:1. Enthesitis-related arthritis was the predominant subtype (72.4%). Most caregivers (70.6%) expressed sadness at diagnosis, and 29.9% continued to express sadness. Nearly two-thirds (65.6%) had to borrow money from others. More than half (59.3%) of the caregivers neglected their health, and 9.0% became sick. Male gender of the child, systemic JIA subtype, low socioeconomic status, high disease activity, extra-articular damage, high parent-reported disease activity and poor quality of life were associated with higher global caregiver burden. JIA has a significant emotional, social, economic, and labour impact on caregivers. Economic and psychosocial support needs to be given to family caregivers caring for children with JIA.

Impact of a mobile application-based home care nursing program on patients’ quality of life and family burden

ObjectiveThis study aims to identify the effectiveness of a mobile application-based home care nursing service in improving patient quality of life and healthy lifestyle and reducing the family burden. MethodsThis study was a clinical trial with a pre- and post-test control group design. The accessible population in this study was post-discharge patients from general hospitals in West Kalimantan and East Kalimantan, Indonesia, who required home care nursing. We allocated a selected sample of 40 people to the intervention group and 40 people to the control group using a randomized block design. We gave mobile application-based home care nursing to the intervention group and community health nursing care to the control group. This study was conducted in 10 months (January–October 2022). We measure the patient quality of life, healthy lifestyle, and family burden before and 3 months after the intervention. ResultsThere was no significant difference in the post-test quality of life between the two groups (p = 0.187), but there was a significant difference in the psychological (p = 0.014) and environmental health (p = 0.021) domain of quality of life. There was no significant difference in the post-test of a healthy lifestyle between the two groups (p = 0.083). There was a significant difference in the post-test family burden between the two groups (p = 0.015). ConclusionMobile Application-Based Home Care Nursing is effective in improving patient quality of life in the psychological and environmental health domains and reducing the family burden for post-discharge patients.

Assessing the Burden of Respiratory Syncytial Virus-related Bronchiolitis in Primary Care and at 15-Day and 6-Month Follow-up Before Prophylaxis in France: A Test-negative Study.

To assess the burden of respiratory syncytial virus (RSV)-related bronchiolitis in primary care and at 15 days and 6 months after a primary care visit. In this test-negative study, children <2 years old with a first episode of bronchiolitis were prospectively enrolled by 45 ambulatory pediatricians in France from February 2021 to April 2023. RSV was assessed with a rapid antigen detection test. The burden of the disease was assessed with a questionnaire, including quality of life (PedsQL 1.0 Infant Scales), at 15-day and 6-month follow-up. Children with a positive RSV test result (RSV+) were compared to those with a negative test result (RSV-). Among the 1591 children enrolled, 750 (47.1%) were RSV+. At 15 days follow-up (data availability: 69%), as compared with RSV- children, RSV+ children more frequently had fever (20.5% vs. 13.7%, P = 0.004) and decreased food intake (27.0% vs. 17.4%, P < 0.001) during the last 3 days. They had higher rates of hospitalization (11.8% vs. 5.8%, P < 0.001), childcare absenteeism (83.5% vs. 66.1%, P < 0.001) and parents who had to stop working to care for them (59.1% vs. 41.0%, P < 0.001) as well as lower quality of life (median PedsQL score 76.2 vs. 78.4, P = 0.03). At 6 months (data availability: 48.5%), the 2 groups did not differ in proportion of medical attendance, hospitalization, antibiotic treatment or quality of life. RSV+ children experienced much more severe disease and follow-up family and societal burden than RSV- children. These data may be used as baseline data as RSV prophylaxis is about to be implemented.

Abstract LB258: ZDHHC20 is a potential target for overcoming ABCB1-mediated multidrug resisance (MDR) in cancer

Abstract ABCB1-mediated multidrug resistance (MDR) in cancer cells is an increasingly important cause of anticancer drug treatment failure. The occurrence of MDR in cancer reduces the effectiveness of antitumor drugs, which results in poor quality of life and increased mortality of patients, and creates a heavy burden for the patient's family and society. Hence, the reversal of ABCB1-mediated MDR in cancer is a highly urgent clinical need. Although reversal agents targeting ABCB1 have been developed and partially tested in clinical trials, their main mechanism limits to inhibit the function of ABCB1 efflux pumps, which lacks tumor tissue specificity and has poor clinical effects, and the development of ABCB1-based resistance reversal strategies has entered a bottleneck. ABCB1 mediates tumor MDR through drug efflux and lysosomal segregation, and intervention in the plasma membrane/lysosomal membrane localization of ABCB1 is a potential strategy to reverse drug resistance. Palmitoylation, as a post-translational lipid modification, plays an important role in protein anchoring, transport, and functional regulation, and is highly relevant to human tumors. In the present study, palmitoylation modification was first identified as a key post-translational lipid modification of ABCB1. ABCB1 is palmitoylated in its cytoplasmic domain, which is further stabilized by blocking its ubiquitination, consequently suppressing ABCB1 degradation by lysosomes. We identified palmitoyltransferase ZDHHC20 (DHHC20) as the main acetyltransferase required for the palmitoylation of ABCB1, and show that the inhibition of ABCB1 palmitoylation via 2-bromopalmitate (2-BP), or the silencing of DHHC20, decreases ABCB1 expression and overcomes MDR in vitro as well as in mice bearing SW620/Ad300 resistance cells. Moreover, Cysteine residues C787 was identified as the main palmitoylation cite in human ABCB1. Database and RNAseq analyses revealed that ZDHHC20 is highly expressed in tumor tissues and tumor MDR cells, which makes it a potential tumor tissue-specific target for overcoming ABCB1-mediated MDR in cancer. Our results firstly identified the novel post-translational modification (palmitoylation) of ABCB1 and provide a new research direction and theoretical basis for breaking through the bottleneck of the development of reversal agents for ABCB1-mediated MDR in cancer. Citation Format: Ning Ji, Xin Peng, Yi-nan Liu, Yuqi Yang, Zhe-Sheng Chen, Dexin Kong, Yueguo Li. ZDHHC20 is a potential target for overcoming ABCB1-mediated multidrug resisance (MDR) in cancer [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2024; Part 2 (Late-Breaking, Clinical Trial, and Invited Abstracts); 2024 Apr 5-10; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2024;84(7_Suppl):Abstract nr LB258.

Cognitive–behavioral therapy for patients with somatoform disorders: A pilot preliminary randomized controlled trial

Background and objective: Cognitive–behavioral therapy (CBT) for somatoform disorders (SFDs) is understudied in China. Western findings may not be applicable to Chinese culture. This preliminary study evaluated the efficacy of CBT for patients in China, relative to treatment-as-usual (TAU). Methods: Seventy patients with SFDs randomly received either combined CBT and TAU (CBT + TAU), or TAU alone between January 2018 to May 2019. The CBT + TAU group received 12 weekly individual 50-minute CBT sessions. Participants were blindly assessed at 4 timepoints (baseline, week 6, end of treatment: week 12; 12 weeks post-treatment: week 24) using the following outcome measures: SQSS (Self-screening Questionnaire for Somatic Symptoms); PHQ-15 (Patient-Health-Questionnaire-15) and the WI (Whiteley Index); GAD-7 (General Anxiety Disorder-7); HAMD-17 (Hamilton Depression Rating Scale-17); Family Burden Interview Schedule (FBIS); Sheehan Disability Scale (SDS); and the Short Form of Quality-of-Life Enjoyment and Satisfaction Questionnaire (Q-LES-Q-SF). The primary endpoint was the difference between the SQSS total score at week 24 and the baseline. A mixed model for repeated measures was used to analyze inter- and intra-group changes from the baseline. Results: At week 24, The least-squares mean (LSM) change of the total score on the SQSS was −18.87 points and −9.69 points, respectively in the CBT + TAU group and in the TAU group (LSM difference, −9.18 points; 95% confidence interval, −15.72 to −2.64; P = 0.0068). At week 24, the LSM changes from baseline in the WI, HAMD, PHQ15, FBIS and SDS total scores were significantly different between the two groups, however, there was no significant difference in the Q-LES-Q-SF. The SQSS of group effect sizes were 0.63 at 24 weeks. The dropout rates of the CBT + TAU and TAU groups were comparable (22.9% and 19.3%). Conclusions: These preliminary findings suggest that CBT may be helpful for improving the symptoms of patients with SFDs in China.

Impacto de un programa de enfermería de atención domiciliaria basado en aplicaciones móviles en la calidad de vida de los pacientes y la carga familiar

ObjectiveThis study aims to identify the effectiveness of a mobile application-based home care nursing service in improving patient quality of life and healthy lifestyle and reducing the family burden. MethodsThis study was a clinical trial with a pre- and post-test control group design. The accessible population in this study was post-discharge patients from general hospitals in West Kalimantan and East Kalimantan, Indonesia, who required home care nursing. We allocated a selected sample of 40 people to the intervention group and 40 people to the control group using a randomized block design. We gave mobile application-based home care nursing to the intervention group and community health nursing care to the control group. This study was conducted in 10 months (January-October 2022). We measure the patient quality of life, healthy lifestyle, and family burden before and 3 months after the intervention. ResultsThere was no significant difference in the post-test quality of life between the two groups (P=.187), but there was a significant difference in the psychological (P=.014) and environmental health (P=.021) domain of quality of life. There was no significant difference in the post-test of a healthy lifestyle between the two groups (P=.083). There was a significant difference in the post-test family burden between the two groups (P=.015). ConclusionMobile Application-Based Home Care Nursing is effective in improving patient quality of life in the psychological and environmental health domains and reducing the family burden for post-discharge patients.

Affiliate stigma and its association with family burden among family members of people living with schizophrenia in China

PurposeUnderstanding affiliate stigma and its impact on family of people living with schizophrenia (PLS) in China is important for culturally informed intervention. This study aims to describe the pattern of affiliate stigma of family members of PLS in China and investigated the association between affiliate stigma and family burden. MethodsPLS and their family members dwelling in community were randomly recruited from four cities across China and completed measures of affiliate stigma and family burden. Linear regression analyses were used to determine the association between affiliate stigma and family burden. ResultsA total of 493 dyads of family member and PLS were include in this study. The mean affiliate stigma in family members was 2.21 (SD = 0.61). The vast majority of family members reported the feeling of inferiority, helpless and sad because of their family members' schizophrenia, but few family members refusing to communicate or contact with the PLS. The mean score of overall family burden was 22.25 (SD = 14.90), with 98 % of participants reported moderate or severe burden. A higher level of affiliate stigma was associated with more family burden (b = 7.837, 95CI: 5.240 to 8.747). Affiliate stigma was significantly associated with family daily activities, entertainment activities, family relationship, physical health and mental health of family members, but not family economic burden. ConclusionA higher level of affiliate stigma was associated with more family burden among family with PLS. Anti-stigma intervention of mental illness should be consider not only PLS but also their family members.

Psychoeducation Increasing Coping and Reducing the Family's Burden of Caring for the Elderly with Stroke Rehabilitation

Stroke is one of the diseases that most often causes a decrease in functional abilities in sufferers, giving rise to severe dependency and dependency (Riskesdas) 2018. Stroke treatment to increase independence and minimize dependency is carried out through a stroke rehabilitation program. The family as caregivers plays an important role in providing post-stroke rehabilitation at home. However, sometimes families experience stress due to the burden of caring for elderly people with stroke. One effort that can be made to overcome psychological impacts is through psychoeducational activities. The aim of the research is to determine the effect of multimedia-based psychoeducation to improve coping and reduce the burden on families in caring for elderly people in stroke rehabilitation. This research used a pre-posttest with control on 30 families selected by purposive sampling. Data were collected using closed questions and the results of data collection were analyzed using univariate and bivariate using t tests. The research results showed that the multi-media based psychoeducational intervention showed significant differences between the intervention group and the control group in aspects of stroke coping and rehabilitation. Information from the research results can be used by officers to determine the effect of psychoeducation to improve coping and reduce the burden on families caring for elderly people who are undergoing stroke rehabilitation

Development of the Care Burden Scale for Family of Elderly in Nursing Facilities

Purpose: This study was conducted to develop a measurement scale for the care burden experienced by families of elderly individuals in nursing facilities.Methods: We developed a preliminary tool based on a broad range of past studies, including experiences of care burden for the families of the elderly in nursing facilities. This tool is anchored on Pearlin’s (1990) construct of the stress process model. Data were collected from 208 families of elderly individuals in nursing facilities, and the construct validity and reliability of the preliminary scale were verified.Results: We developed a questionnaire consisting of a four-point Likert-type scale in a self-report form with 30 items divided into 4 factors. The factors were named 'Social burden', 'Economic burden', 'Psychological burden', and 'Physical burden'. The Cronbach’s ⍺ of the total items was .94, and the factors ranged from .65 to .87.Conclusion: The study results will help evaluate the level of caregiving burden for families of the elderly in nursing facilities. Therefore, it is expected to be used in future research on nursing interventions aimed at improving the understanding of caregiving burden and reducing the caregiving burden of elderly family members in nursing facilities.

Premarital screening programme in Saudi Arabia: Insights into men's awareness and perceptions.

This study investigates the knowledge and attitudes of Saudi men on premarital screening, 19 years after its implementation. A cohort of 133 males was examined. Out of the 133 male screening participants, a significant majority of 126 individuals (94.7%) were found to be aware of the premarital screening program. A smaller number of individuals (88, 66.2%) were aware of the conditions detected by the screening. A disagreement developed on the legality of marriage in the event of an adverse test result. Many participants stated that the primary purpose of the premarital screening program was to lessen the social and familial burdens associated with incompatible marriages. Many respondents preferred that the program include mental illness and drug testing. Even if compatibility existed, a sizeable proportion of respondents declined to proceed with the marital procedure if one companion was a carrier. The participants had a clear understanding of the importance of premarital screening. However, this assertion contradicts the current evidence regarding the prevalence of hereditary diseases. To reduce disease burden, the significance of the program and the value of making informed decisions following examinations must be emphasized.

A qualitative exploration of the role of a palliative care pharmacist providing home-based care in the rural setting, from the perspective of health care professionals.

Pharmacists are often not recognised as a core part of palliative care teams, despite their ideal placement to assist with the burden of medication management. This study explored the role of pharmacists working in the rural palliative care team, in the home-based setting. Health care professionals working with palliative care patients in rural South Australia participated in semi-structured interviews. Data were analysed using thematic analysis. Data from 20 participants identified 10 themes. Theme 1: This model of care gives patients a choice. Theme 2: The pharmacist is a trusted source of support and information. Theme 3: Patient, carer and family distress is reduced. Theme 4: Enables patients to stay at home by improving medication knowledge and decreasing burden; 4.1-Patient, carer and family's understanding about medication management is improved, 4.2-Patient, carer and family travel is decreased, 4.3-Burden associated with getting to the doctor is decreased. Theme 5: Communication between all parties is enhanced; 5.1-Enhanced communication between the patient and health care team, 5.2-Enhanced communication within the health care team. Theme 6: Patient, carer and family burden of coordinating prescriptions and medications is reduced. Theme 7: Benefits health care professionals by improving medication knowledge, reducing workload and stress; 7.1-Understanding about medications and their management is improved, 7.2-Workload is reduced, 7.3-Work-related stress is reduced. Theme 8: The disparity of care between rural and urban patients is reduced. Theme 9: Helps to address rural workforce shortages. Theme 10: Challenges of this model of care; 10.1-A need for greater pharmacist capacity to meet demand, 10.2-A need for increased and sustained funding for the pharmacist role, 10.3-Large amount of travel to get to patients. Rural health care professionals are supportive of pharmacists working as part of the palliative care team in home-based settings and identified many benefits of this model of care.

SMART Family and Friends: Feasibility and outcomes of a video-conference delivered intervention for families impacted by another's methamphetamine use

IntroductionFamilies affected by another's substance use, including methamphetamine, experience harms to their mental and physical health. Yet, research has paid little attention to support and service needs of this population. This pilot study examines the feasibility and outcomes of SMART Family and Friends, a video-conference-delivered mutual-support group targeting families affected by another's methamphetamine use. MethodsRecruitment for this study occurred between March–October 2021 via the SMART Recovery Australia website. Participants were English-speaking Australian residents, ≥18 years, affected by another's methamphetamine use, interested in participating in a manualised eight-module group delivered via video-conferencing. Feasibility was evaluated by attendance rates, participant satisfaction, fidelity ratings, and semi-structured interviews. Measures of distress, quality of life, and family functioning assessed outcomes at baseline and one-month post-treatment conclusion. ResultsForty-three participants commenced SMART Family and Friends groups. 84 % (n = 36) completed ≥4 modules, 67 % (n = 29) completed ≥6, and 42 % (n = 18) completed all 8 modules. Participant satisfaction (M = 4.32, SD = 0.66, out of 5) and facilitator fidelity (>94 % for all modules) were high. A within-group analysis, without comparison condition demonstrated significant improvements in psychological distress (d = 0.38), family impact (d = 0.64), family strain symptoms (d = 0.48), and total family burden (d = 0.69) post-treatment. Qualitative findings illustrated the benefits and challenges of the video-conference-delivered group, as well as recommendations for improvement. ConclusionsResults provide initial support for the feasibility and positive outcomes of the SMART Family and Friends program. These findings demonstrate the successful provision of a mutual-support group for affected families delivered via video-conferencing, and merit further sufficiently powered randomised-control-trials to evaluate efficacy.

QUANTITATIVE ANALYSIS OF THE IMPACT OF FUNDING POLICIES ON THE MENTAL HEALTH OF PREPARATORY STUDENTS IN NINGXIA

Funding provides financial support and helps college and university students reduce psychological pressure, enhance mental health, and improve the quality of learning and life. This study uses 611 preparatory students in the 2022 class of Ningxia University National Preparatory Education College as a research sample through a questionnaire survey, and gender, nationality, student sources, family economic income, and designated training colleges and universities as independent variables. Funding reduces family and personal burdens, increases social support and recognition, relieves low self-esteem, depression, or anxiety due to financial difficulties, helps students enjoy normal life and activities, and improves The interpersonal skills of poor students were used as the dependent variable for quantitative analysis, aiming to analyze the impact of funding policies on the mental health of Ningxia College preparatory students. The survey results showed that funding policies played a positive role in promoting students' mental health.

A study on the impact of marital status on the survival status of prostate cancer patients based on propensity score matching

Marital status is an independent prognostic factor for survival in many types of cancers, but its prognostic impact on patients with prostate cancer (PCa) has not been established. The aim of this study was to explore the independent prognostic factors of PCa and to investigate the effect of marital status on survival outcomes in patients with different stratified by PCa. Using the surveillance, epidemiology, and end results (SEER) database, we collected data on 584,655 PCa patients diagnosed between 1975 and 2019. Marital status was classified as married, divorced, widowed, and single. We used the Kaplan–Meier analysis and single multivariate Cox proportional hazards regression analysis to determine the effect of marital status on overall survival (OS) and cancer-specific survival (CSS). In addition, we performed subgroup analyses for different ages, Gleason score and PSA values, and performed a 1:1 propensity score matching (PSM) to reduce the impact of confounding factors to obtain more accurate matching results. According to our findings, marital status was an independent prognostic factor for the survival of PCa patients and a better prognosis of married patients. Moreover, we also found that factors such as age, TNM stage, Gleason score, and PSA concentration were also considered as important predictors for the prognosis of PCa. The above findings can facilitate early detection and treatment of high-risk PCa patients, prolong their life and reduce family burden.

Buying a Wealthy Dream: Determinants of Rural Residents' Lottery Purchase Behavior in China.

The expansion of illicit lottery activities has caused significant harm to both agricultural production and the livelihood of rural residents. An analysis of the factors that influence rural residents' participation in underground lotteries can provide crucial insight for regulating the lottery industry's development. This study examines the present state of rural residents' participation in underground lotteries, investigates the factors that impact their participation using the Double-Hurdle model, and further employs the ISM model to evaluate the correlations and hierarchical structure among the factors, using field survey data collected from 603 rural residents in S Province, China. The findings reveal that 53.07% of the respondents have participated in underground lotteries. Risk preference, information acquisition, social networks, age, education, family burden, percentage of agricultural labor, agricultural business scale, and household income significantly affect whether residents purchase lotteries (WPL). All factors, except the percentage of agricultural labor and agricultural business scale, also significantly impact underground lottery spending (LS). Among the significant influencing factors, rural residents' risk preference is the direct surface factor, whereas agricultural business scale, household income, information acquisition, and social networks are the middle indirect factors, and residents' age, education, family burden, and percentage of agricultural labor are the deep-rooted factors. It is recommended to regulate the lottery industry's development can be achieved by enhancing entertainment and cultural activities, expanding economic opportunities, enhancing rural education, increasing law awareness, and improving the public welfare lottery business model. The conclusions offer a valuable reference point for the standardized development of the lottery industry and the promotion of social stability in rural areas.

Healthcare Burden and Resource Utilization After Pediatric Acute Respiratory Distress Syndrome: A Secondary Analysis of the Collaborative Pediatric Critical Care Research Network Acute Respiratory Distress Syndrome Study.

To describe family healthcare burden and health resource utilization in pediatric survivors of acute respiratory distress syndrome (ARDS) at 3 and 9 months. Secondary analysis of a prospective multisite cohort study. Eight academic PICUs in the United States (2019-2020). Critically ill children with ARDS and follow-up survey data collected at 3 and/or 9 months after the event. None. We evaluated family healthcare burden, a measure of healthcare provided by families at home, and child health resource use including medication use and emergency department (ED) and hospital readmissions during the initial 3- and 9-month post-ARDS using proxy-report. Using multivariable logistic regression, we evaluated patient characteristics associated with family healthcare burden at 3 months. Of 109 eligible patients, 74 (68%) and 63 patients (58%) had follow-up at 3- and 9-month post-ARDS. At 3 months, 46 families (62%) reported healthcare burden including (22%) with unmet care coordination needs. At 9 months, 33 families (52%) reported healthcare burden including 10 families (16%) with unmet care coordination needs. At month 3, 61 patients (82%) required prescription medications, 13 patients (18%) had ED visits and 16 patients (22%) required hospital readmission. At month 9, 41 patients (65%) required prescription medications, 19 patients (30%) had ED visits, and 16 (25%) required hospital readmission were reported. Medication use was associated with family healthcare burden at both 3 and 9 months. In a multivariable analysis, preillness functional status and chronic conditions were associated with healthcare burden at month 3 but illness characteristics were not. Pediatric ARDS survivors report high rates of healthcare burden and health resource utilization at 3- and 9-month post-ARDS. Future studies should assess the impact of improved care coordination to simplify care (e.g., medication management) and improve family burden.

Quality of life of families and siblings of children and adolescents with meningomyelocele.

Children with meningomyelocele may require continuous care. Consequently, there is a risk for caregiver burden and impact on family quality of life (QoL), including siblings' QoL. Some studies analysed caregivers' burden and family QoL separately. However, none of these studies evaluated siblings' QoL and the associations between these three dimensions. This study investigated the associations between caregivers' burden, family QoL and siblings' QoL in Brazilian families of children with meningomyelocele and its correlations with sociodemographic, functional and clinical variables. Siblings' QoL was specifically assessed using as a parameter the QoL of typically developed Brazilian children. One hundred and fifty families, 150 caregivers and 68 siblings completed the Family Quality of Life Scale, Burden Interview, KIDSCREEN-27 Child and Adolescent Version and Parents Version questionnaires. Most families and caregivers reported a high family QoL and a low caregiver burden. Family QoL was significantly lower as caregivers' burden increased. Caregiver's burden was significantly lower with increasing family QoL levels. Self-reported siblings' QoL was significantly worse than that of typically developed peers. There were no significant differences between self and parent-reported siblings' QoL. Self-reported siblings' QoL was significantly worse as their age increased and better with increasing family QoL levels. Parent-reported siblings' QoL was significantly worse with increasing levels of caregiver's burden and significantly better as family QoL increased. There were no significant associations with functional and clinical variables. Despite the cross-sectional nature of the available data precludes any statements of causality, our results reinforce the relevance of knowing the factors that influence the QoL of families and siblings of children and adolescents with meningomyelocele and the relevance of actions aimed at reducing caregivers' burden, improving family QoL and meeting siblings' individual needs. Future multicenter studies may validate the generalizability of our findings.