Family Survey Research Articles

Are cancer patients living alone more or less likely to achieve a good death? Two cross-sectional surveys of bereaved families.

This study examined differences in sociodemographic characteristics and the achievement of a good death between cancer patients who live alone and those who do not live alone prior to death in different settings. Secondary analysis of data collected across two cross-sectional self-reported questionnaire surveys was undertaken. The participants were bereaved family members of cancer patients who had died in palliative care units (PCUs), acute hospitals or homes. We stratified the data by the place of death and examined the differences in sociodemographic characteristics to determine the relationship between cancer patients achieving a "good death" and whether they were living alone. The data were collected through 15,949 surveys. On the Good Death Inventory, significantly higher total scores emerged for cancer patients who were living alone than for those who not living alone in PCUs (effect size [ES]=0.11, Student's t-test: p<.0001), but not in acute hospitals (ES=-0.03, p=0.74) or home care services (ES=0.02, p=0.86). Cancer patients who were living alone were more likely to have been female, been older and have earned a lower annual income than those who were not living alone. Thus, among those who had received specialized palliative care, there was no difference in the quality of palliative care between cancer patients who were or were not living alone.

Consumption of Breast Milk Is Associated with Decreased Prevalence of Autism in Fragile X Syndrome.

Breastfeeding is associated with numerous health benefits, but early life nutrition has not been specifically studied in the neurodevelopmental disorder fragile X syndrome (FXS). Herein, I evaluate associations between the consumption of breast milk during infancy and the prevalence of autism, allergies, diabetes, gastrointestinal (GI) problems and seizures in FXS. The study design was a retrospective survey of families enrolled in the Fragile X Online Registry and Accessible Research Database (FORWARD). There was a 1.7-fold reduction in the prevalence of autism in FXS participants who were fed breast milk for 12 months or longer. There were strong negative correlations between increased time the infant was fed breast milk and the prevalence of autism and seizures and moderate negative correlations with the prevalence of GI problems and allergies. However, participants reporting GI problems or allergies commenced these comorbidities significantly earlier than those not fed breast milk. Parsing the data by sex indicated that males exclusively fed breast milk exhibited decreased prevalence of GI problems and allergies. These data suggest that long-term or exclusive use of breast milk is associated with reduced prevalence of key comorbidities in FXS, although breast milk is associated with the earlier development of GI problems and allergies.

Changes in Food Expenditures in Urban and Rural Egypt

The aim of this research is to trace recent changes in family expenditures on food commodities between 2015 and 2017/18. The data is drawn from CAPMAS publications on family income, expenditure, and consumption for both years. Three food groups are explored in this paper: 1- The aggregate group of food and beverages; 2-The grains and bread group; and 3- The meat group. Two statistical models are utilized for the purposes of data analysis. The first model is known as Working's model and the second model is the well-Known double logarithmic model. The analysis shows that the expenditure elasticity of the aggregate group of food and beverages ranges between 0.423 for high-income urban families in 2017/18 to 0.763 for urban poor families in 2015. For rural families the same elasticity is about 0.313 for high-income families in 2017/18 and about 0.751 for poor families in 2015. These estimates are derived from the OLS estimates of Working's model. The double logarithmic model gives one single estimate for expenditure elasticity for the entire set of data. For example, the expenditure elasticity for all families in 2017/18 is 0.63 in urban areas and 0.59 in rural areas according to the double logarithmic model. The same estimates are 0.64 for urban areas and 0.56 for rural areas according to Working's model. The Working's model fits the family survey data quite well and gives multiple estimates of expenditure elasticity according to the level of family income. In contrast, the double logarithmic model gives one estimate of expenditure elasticity that does not change with the level of family income. That is Working's model would be more suitable for policy analysis purposes.

‘Parents don’t need to come to school to be engaged:’ teachers use of social media for family engagement

ABSTRACT This paper presents a small-scale Critical Participatory Action Research (CPAR) study, investigating school leaders’ efforts to enhance families’ engagement in their children’s learning, through classroom teachers’ use of social media. The study occurred within three Australian primary schools, situated within a culturally and linguistically diverse community. Throughout two action research cycles the participating school leaders and classroom teachers critically reflected on family survey data and a sample of social media posts depicting student learning, so as to identify opportunities for enhanced family engagement. A practice lens was used to examine the sayings (words and language), doings (activities and resources) and relatings (relationships and power dynamics) featured within social media posts, to facilitate the participating leaders’ critical self-reflection of current practice. Data were collected through surveys, semi-structured interviews, transcripts of reflective practice meetings and reflective practice tools utilised throughout the CPAR process. Analysis of practice architectures identified systemic features utilised by school leaders to support classroom teachers’ practice change. Furthermore, this study highlights the significant role that school leaders have in facilitating classroom teachers’ use of social media for family engagement.

Identification and expression analysis of E2 ubiquitin-conjugating enzymes in cucumber

Protein ubiquitination is one of the most common modifications that can degrade or modify proteins in eukaryotic cells. The E2 ubiquitin-conjugating enzymes (UBCs) are involved in multiple biological processes of eukaryotes and their response to adverse stresses. Genome-wide survey of the UBC gene family has been performed in many plant species but not in cucumber (Cucumis sativus). In this study, a total of 38 UBC family genes (designated as CsUBC1–CsUBC38) were identified in cucumber. The phylogenetic analysis of UBC proteins from cucumber, Arabidopsis and maize indicated that these proteins could be divided into 15 groups. Most of the phylogenetically related CsUBC members had similar conserved motif patterns and gene structures. The CsUBC genes were unevenly distributed on seven chromosomes, and gene duplication analysis indicated that segmental duplication has played a significant role in the expansion of the cucumber UBC gene family. Promoter analysis of these genes resulted in the identification of many hormone-, stress- and development-related cis-elements. The CsUBC genes exhibited differential expression patterns in different tissues and developmental stages of fruit ripening. In addition, a total of 14 CsUBC genes were differentially expressed upon downy mildew (DM) infection compared with the control. Our results lay the foundation for further clarification of the roles of the CsUBC genes in the future.

The Weight of Being Unauthorized? Legal Status Variation in the Association between US Exposure and Obesity among Hispanic Immigrants in Los Angeles.

We examine whether exposure to the US, experienced under certain conditions of disadvantage, namely immigrant legal status, is associated with body weight. Using the pooled, cross-sectional 2001 and 2008 Los Angeles Family and Neighborhood Survey (LAFANS) (n = 2063), we examine whether body mass index (BMI) and obesity vary by Hispanic immigrants' legal status and time exposure to the US. The increased risk of obesity associated with greater US exposure is more pronounced among unauthorized Hispanic immigrants compared to their legally resident coethnic peers, after adjusting for age and age-at-arrival. It is not only residing in the US that is associated with increases in body weight, but residing in the US as an unauthorized immigrant. Improved data and methods are needed to facilitate research of greater policy significance and a refined understanding of how health integration processes vary by legal status.

Quality of end-of-life care for Vietnam-era Veterans: Implications for practice and policy

BackgroundIn federal response to the aging population of Vietnam-era Veterans, Congress directed the Department of Veterans Affairs (VA) to create a pilot program to identify and develop best practices for improving hospice care for this population. A first step in VA's response was to identify whether the end-of-life (EOL) care needs and outcomes of Vietnam-era Veterans differed from previous generations. MethodsUsing medical records and bereaved family surveys, we examined clinical characteristics, healthcare utilization, and EOL quality indicators for Vietnam-era Veterans who died in VA inpatient settings between fiscal year 2013-2017. Contemporaneous comparisons were made with World War II/Korean War-era Veterans. ResultsCompared to prior generations, higher percentages of Vietnam-era Veterans had mental health/substance use diagnoses and disability. Similar percentages of family members in both groups reported that overall EOL care was excellent; however, post-traumatic stress disorder management ratings by families of Vietnam-era Veterans were significantly lower. ConclusionsAlthough current VA EOL practices are largely meeting the needs of Vietnam-era Veterans, greater focus on mental health comorbidity, including post-traumatic stress disorder, Agent Orange-related conditions, and ensuring access to quality EOL care in the community is warranted. ImplicationsPolicymakers and healthcare professionals should anticipate more physical and mental health comorbidities among Veterans at EOL as Vietnam-era Veterans continue to age. Findings are being used to inform the development of standardized EOL care protocols and training programs for non-VA healthcare providers that are tailored to the needs of this population.

Different Influence of Negativeand Positive Spillover between Work and Life on Depression in a Longitudinal Study.

BackgroundThis study investigated the longitudinal associations between the degrees of positive and negative spillover in work–life balance (WLB) at baseline and reports of depressive mood at a 2-year follow-up in Korean women employees.MethodsWe used a panel study design data of 1386 women employees who participated in the Korean Longitudinal Survey of Women and Families in both 2014 and 2016. Depressive mood was measured using the “10-item Center for Epidemiologic Studies Depression Scale.” Associations between the positive and negative spillover in WLB at baseline and reports of new incidence of depressive mood at 2-year follow-up were explored using a multivariate logistic regression model.ResultsNegative spillover in WLB at baseline showed a significant linear association with reports of depressive mood at 2-yearfollow-up after adjusting for age, education level, marital status, number of children, and positive spillover (P = 0.014). The highest scoring group in negative spillover (fourth quartile) showed a significant higher odds ratio of 1.95 compared with the lowest scoring group (first quartile; P = 0.036).ConclusionPositive spillover in WLB showed a U-shaped association with depression. The degrees of positive and negative spillover in WLB among Korean women employees at baseline were associated with new incidence of depressive mood within 2 years. To prevent depression of female workers, more discrete and differentiated policies on how to maintain healthy WLB are required.

The effect of public health insurance expansions on the mental and behavioral health of girls and boys

This paper examines the effects of public health insurance expansions on the mental health care utilization and mental and behavioral health of children 6–17 years old. We leverage major expansions in public health insurance eligibility for children and adolescents under Medicaid and the State Children's Health Insurance Program during 1997–2002 to examine mental health care utilization and outcomes for children in the National Survey of America's Families. The study examines these dynamics by gender of children due to their distinct mental health care patterns and risks. The expansions are associated with an estimated 30% reduction in mental health care utilization for girls, but no measurable effect for boys, which may partly be accounted for by increased well-child visits for girls. Mental health improves only for teenagers; boys in particular have an estimated 22 percent increase in their probability of the highest level of health. Parents experience spillovers of lower insurance coverage for themselves – likely from dropping private family coverage for public child-only coverage – but slightly better mental health.

결혼이주여성의 사회적 자본 접근성과 우울감 경험: 출신 국가의 영향을 중심으로

This study investigated the relationship between social capital access and depression among female marriage migrants in South Korea. Assuming that the country of origin could play a role as a context in assessing the value of social capital, this study attempted to examine the varying degrees of association between social capital access and depression across countries of origin. Using the National Survey of Multicultural Families 2018, the responses of 5,514 female marriage migrants from China, Japan, Vietnam, and the Philippines, and Korean-Chinese migrants were analyzed. Descriptive statistics and ordered logit models were utilized for analyses. It was found that, in general, only Korean-Chinese females had higher social capital access to Koreans than that to people from the same country of origin. There was a significantly negative association between social capital access to Koreans and depression only for Korean-Chinese female migrants. On the contrary, there was a significantly negative association between depression and social capital access to people from the same country for all female marriage migrants. Among the control variables, negative influences of the satisfaction of couple relationship and that of the parent-child relationship, household income, and subjective health were revealed. Participation in religious activities was positively related to depression. These results imply that there were varying influences of the country of origin as the context for determining the use-value of social capital for female marriage migrants.

The association of in-utero exposure to ambient fine particulate air pollution with low birth weight in India

A growing body of research indicates that in-utero exposure to ambient fine particulate matter (PM2.5) is a risk factor for low birth weight (LBW). However, research on India, where the high and rising level of ambient air pollution is a significant health concern, is limited. In this study, we analyze the association between ambient PM2.5 and LBW in India. We match data on birth weight from the National Family and Health Survey (NFHS) conducted in India in 2015–16 with high-resolution spatial data on annual ambient PM2.5 concentration to calculate in-utero exposure based on the residential location of each child. We estimate the association of in-utero exposure to ambient PM2.5 with birth weight and LBW, after adjusting for child level, maternal, and household level characteristics that predict birth weight. In our sample (n = 149 416), in comparison to the reference category of in-utero PM2.5 level less than 26.7 µg m−3, the adjusted OR of LBW increases non-linearly from 1.098 (95% CI: 0.954, 1.263) for children in the exposure band 39.3–44.7 µg m−3 (i.e., the fourth octile) to 1.241 (95% CI: 1.065, 1.447) for those in the exposure band 44.7–51.6 µg m−3 (i.e., the fifth octile) and 1.405 (95% CI: 1.126,1.753) for those with in-utero PM2.5 level greater than 77.3 µg m−3 (i.e., the last octile). Our findings show that exposure to ambient PM2.5 is strongly associated with LBW in India and suggest that policies that improve air quality may be necessary for achieving the World Health Assembly target of 30% reduction in LBW by 2025.

Double burden of underweight and overweight among Indian adults: spatial patterns and social determinants.

The current study explores the spatial patterns of underweight and overweight among adult men and women in districts of India and identifies the micro-geographical locations where the risks of underweight and overweight are simultaneously prevalent, after accounting for demographic and socio-economic factors. We relied on BMI (weight (kg)/height squared (m2)), a measure of nutritional status among adult individuals, from the 2015-2016 National Family and Health Survey. Underweight was defined as <18·5 kg/m2 and overweight as ≥25·0 kg/m2. We adopted Bayesian structured additive quantile regression to model the underlying spatial structure in underweight and overweight burden. Men aged 15-54 years (sample size: 108 092) and women aged 15-49 years (sample size: 642 002). About 19·7 % of men and 22·9 % of women were underweight, and 19·6 % of men and 20·6 % of women were overweight. Results indicate that malnutrition burden in adults exhibits geographical divides across the country. Districts located in the central, western and eastern regions show higher risks of underweight. There is evidence of substantial spatial clustering of districts with higher risk of overweight in southern and northern India. While finding a little evidence on double burden of malnutrition among population groups, we identified a total of sixty-six double burden districts. The current study demonstrates that the geographical burden of overweight in Indian adults is yet to surpass that of underweight, but the coexistence of double burden of underweight and overweight in selected regions presents a new challenge for improving nutritional status and necessitates specialised policy initiatives.

Parental Depression and Contextual Selection: The Case of School Choice.

Parental depression constricts children's development, but the mechanisms implicated-beyond daily parenting tactics-remain unknown. Today, parents must evaluate and select environmental contexts for child-rearing within increasingly complex residential and educational markets. Depression may hamper parents' abilities to navigate this terrain, constraining information collection and impairing child-oriented decision-making. In turn, depressed parents' children may lack access to developmentally enriching neighborhood, school, and child care settings. K-12 school sorting offers a strategic case to assess these expectations, given proliferating nontraditional options and school quality data. Analyses using the Los Angeles Family and Neighborhood Survey (N = 2,754) linked to administrative data suggest that depressed parents' children attend magnet, charter, or private schools at lower rates than similarly situated children of nondepressed parents; depression-based disparities appear largest among Latino and Black families. The study motivates future research examining whether the depression-contextual selection link mediates intergenerational processes and exacerbates segregation.

Examining the role of high-risk fertility behaviour in chronic undernutrition among Indian married women age 15-49

IntroductionMaternal undernutrition plays a critical role in influencing maternal, and child health outcomes and magnifies the risk of death of the mother at the time of delivery. High-risk fertility behaviour is an obstacle to tackle maternal and child mortality. ObjectivesThe aim of this study is to understand the level of high-risk fertility behaviour and chronic undernutrition among ever-married women, and also to examine the association between the two. MethodsData for 190,581 ever-married women (15–49) giving at least one birth during five years prior to the National Family and Health Survey (2015-16) was used. Descriptive statistics and modified Poisson regression were applied to examine the association between high-risk fertility behaviour and chronic undernutrition. ResultsResults show that 24% women were undernourished and 32% were subject to have at least one of the high-risk fertility behaviour. Collectively, 26% and 6% of the women were susceptible to single and multiple high-risk behaviour, respectively. After adjusting sociodemographic backgrounds, results showed a significant association between high-risk fertility behaviour and chronic undernutrition. As such, 5% of women were likely to be undernourished due to high-risk fertility behaviour on the whole, and 4% and 6% of the women, respectively, were likely to be undernourished due to single and multiple high-risk fertility behaviour. ConclusionsThis study finds that maternal high-risk fertility behaviour is an important factor in increasing the likelihood of women to be in a state of chronic undernourishment. Therefore, policy and programme should be implemented to reduce high-risk fertility behaviour among Indian women.

Situación actual del paciente pediátrico con patología crónica compleja: una experiencia entre atención primaria y hospitalaria

ObjectiveTo analyze the assessment of the care of children with medical complexity (CMC) in Primary Care (PC), from the point of view of their doctors and their families. DesignObservational, descriptive and transversal study. SitePC Pediatrics and Complex Chronic Pathology Unit (UPCC) of Hospital Universitario La Paz (HULP). ParticipantsPatients and relatives of the UPCC and their PC physicians of the Community of Madrid (CAM). InterventionsFace-to-face and online validated surveys were conducted. Main measurementsDegree of satisfaction in the training, education and specific management of the CMC according to Likert-type scales. ResultsFifty-three families and 170 PC physicians (96.5% pediatricians) were surveyed. The results of the family survey reveal lack of coordination between levels of care (73.6%), little confidence in the first level of care, and an impression of poor problem-solving capacity by PC pediatricians (50%).Among PC physicians, there is little training in the follow-up of CMC (96.5%), little experience in their management (93%) and insufficient communication with the hospital (80.5%).Lack of time in consultations is a common problem, perceived by pediatricians and patients. ConclusionsThe lack of coordination between PC and Hospital Care is detected as an important problem in the continuity of care at CMC. Interventions are needed to improve this coordination. The PC is close to the family but needs to improve the education and training of professionals in health problems and technical support from CMC, as well as increase the time necessary for their care.

Depression among Mexican immigrant mothers: the mediating role of self-efficacy

ABSTRACT This study examines how immigration status and neighborhood collective efficacy shapes mothers’ self-efficacy and, in turn, depression. Path analysis was conducted drawing data from 578 Mexican-American and Mexican immigrant mothers who participated in the first wave of the Los Angeles Family and Neighborhood Survey. The results of this study revealed that both neighborhood collective efficacy beliefs and undocumented status are mediated by personal self-efficacy beliefs. This dynamic suggests the importance of addressing undocumented mothers’ sense of self-efficacy to reduce the risk of major depression.

Barriers and Challenges to Making Referrals for Treatment and Services for Opioid Misuse in Family Planning Settings.

Background: In this opioid overdose epidemic, women are an overlooked group seeing increasing rates of overdose death. Implementation challenges have prevented evidence-based interventions from effectively reaching women who misuse opioids, with gaps in access to effective treatment and services. Family planning clinics could serve as important points of contact for referral to needed treatments and services. The study explores how family planning staff knowledge and attitudes related to opioid misuse serve as potential barriers and challenges in making referrals for evidence-based services and treatments. Methods: In 2018, we conducted a national online survey of family planning staff, assessing knowledge and attitudes of treatments and services for opioid misuse. Results: A total of 691 family planning staff completed the survey. Most respondents agreed that opioid misuse was a major problem in their community (86.0%) and identified challenges in responding to it, including a lack of treatment access (70.3%), the absence of in-house behavioral health staff (67.2%), and unfamiliarity with local treatment providers (54.1%). Respondents reported low levels of acceptability for syringe services programs (46.0%), medications such as methadone and buprenorphine (55.4%), and naloxone to reverse opioid overdose (60.1%). Controlling for other factors, race/ethnicity, urbanicity, workplace role, and substance use training were associated with differences in acceptability. Conclusions: Family planning settings could play a critical role in connecting women who misuse opioids to treatment and services. Strategies are needed to increase the acceptability of evidence-based interventions and the feasibility of having family planning staff play a linkage role.

Targeted next generation sequencing and family survey enable correct genetic diagnosis in CRX associated macular dystrophy \u2013 a case report

BackgroundWe present 3 members of a family with macular dystrophy, originally diagnosed as Stargardt disease, with a significantly variable age at onset, caused by a heterozygous mutation in CRX.Case presentationA 43-year-old female with bull’s eye maculopathy, whose sister was diagnosed with Stargardt disease previously at another centre, was found to have a single ABCA4 variant. Further examination of the family revealed that the asymptomatic father was also affected, indicating a dominant pattern of inheritance. In addition, the ABCA4 variant was not identified in the sister originally diagnosed with Stargardt disease. Next generation sequencing identified a heterozygous c.121C > T, p.R41W missense mutation in CRX in all 3 affected members.ConclusionsWe describe a common phenotype, but with variable age at onset, with autosomal dominant inheritance and reduced penetrance in a family found to have a pathogenic sequence variant in CRX. This illustrates the importance of panel based molecular genetic testing accompanied by family studies to establish a definitive diagnosis.

The Initial Impact of the Coronavirus Disease 2019 Pandemic on ICU Family Engagement: Lessons Learned From a Collaborative of 27 ICUs.

To describe the impact of coronavirus disease 2019 on family engagement among ICUs participating in a multicenter collaborative promoting implementation of family-centered care projects and to report sites' experiences with the collaborative itself prior to its cancelation due to the pandemic in March 2020. Cross-sectional survey. Twenty-seven academic and community ICUs in the United States and South Korea. Site leaders. Prior to March 2020, all sites had participated in 6 months of webinars, monthly calls, and listserv communication to facilitate projects and to collect preimplementation family satisfaction and clinician perception data. Planned projects included ICU orientation initiatives (12, 44.4%), structured family care conferences (6, 22.2%), and ICU diaries (5, 18.5%). After cancelation of the collaborative, 22 site leaders (81.5%) were surveyed by phone from June 2020 to July 2020. Twenty (90.1%) reported having stopped their site project; projects that continued were 1) a standardized palliative extubation protocol and 2) daily written clinical summaries for families. Sites described significant variability in visitor restriction policies and uncertainty regarding future policy changes. Four sites (18.2%) reported that their hospital did not provide personal protective equipment to visitors. Regarding video conferencing with families, 11 sites (52.4%) reported clinicians' using their own personal devices. Two-hundred twelve family surveys and 346 clinician surveys collected prior to cancelation highlighted a broad need for family support. When leaders were asked on a scale from 0 to 10 how helpful collaborative activities had been prior to cancelation, mean response was 8.0 (sd 2.5). While the collaborative model can help promote ICU family engagement initiatives, coronavirus disease 2019 has impeded implementation of these initiatives even among motivated units. ICUs need adequate personal protective equipment for visitors and video conferencing capabilities on hospital devices while strict visitor restrictions continue to evolve.

Genome-Wide Identification and Characterization of Yellow Horn (Xanthoceras sorbifolia Bunge) NAC Transcription Factor Gene Family against Diverse Abiotic Stresses

Yellow horn (Xanthoceras sorbifolia Bunge) belonging to the Sapindaceae family is a well-known oil-rich seed shrub widely distributed throughout the northern regions of China, which is preferred owing to its exceptional economic, environmental, ecological and ornamental value. The recent completion of yellow horn genome sequencing facilitates a genome-wide survey of yellow horn transcription factor (TF) families. Plant-specific NAC proteins represent a major TF family in regulating diverse plant biological processes at different tissues and developmental stages. However, no detailed information can be obtained concerning the yellow horn NAC (XsNAC) proteins. Given this, we performed a genome-wide survey of XsNAC gene families. In total 103 putative XsNACs genes were identified from yellow horn genome. Phylogenetic analysis performed between NAC proteins of yellow horn and Arabidopsis revealed that these XsNAC proteins can be classified into 12 subgroups. Gene structure analysis revealed that the intron number of XsNAC genes varied from 0 to 12, and most XsNAC genes had two introns. Conserved motif analysis suggested that all putative XsNAC proteins had conserved NAC domain and/or NAM domain. These predicted XsNAC genes were randomly distributed on 15 chromosomes at diverse densities, particularly on chromosome 1, chromosome 7 and chromosome 11. The cis-regulatory elements (CREs) analysis and protein-protein interaction network analysis showed that the XsNAC proteins may involve in many plant physiological and biochemical processes. Transcriptome analysis revealed that XsNAC genes had differential expression profiles in response to various abiotic stresses, implying their key roles in environmental stress responses. This work would lay solid foundation for future functional characterization of XsNAC proteins.