Value Of Families Research Articles

Perspectives of Hospitalized Mental Health Care Users Concerning the Involvement of Family Members in Their Care: A Qualitative Study.

The value of families and professionals in mental health care is well understood. Patient perspectives appear to have gotten less attention to date. This study investigated the perspectives of hospitalized mental health care users on the involvement of family members in their care using a qualitative phenomenological design. The participants with lived experience of family members being involved in their care were chosen using non-probability, purposive sampling. Individual interviews were carried out with the assistance of a voice recorder and observation notes. Because of data saturation, only fifteen people were interviewed. The interviews were transcribed verbatim and analyzed using Colaizzi's method. It started with reading and reviewing the transcript to extract key statements about the phenomenon. The meaning was then determined by carefully studying the primary significant statements and phrases. The established meanings were then organized into themes and subthemes. The three themes that emerged from the data analysis are as follows: a wide variation in patients' perspectives when family members remind them of their medicine, unpredictable visitation by family members, and a lack of support from family members. There were also the following five sub-themes: not visiting mental health care users in the hospital causes uncertainty about their future, mental health care users were concerned by fewer visits from relatives, friends were perceived as a contributory factor to no or limited visitation by family members, disappointment by a lack of financial support, and perceived lack of emotional support from family members. There is a need for family members to visit mental health care users to remove uncertainty about their future. Healthcare providers should listen to mental health care users to identify the challenges they are faced with, and hospital policies tailored to enhancing the involvement of family members should be formulated.

Determining tolerant tomato genotypes to salt stress according to physiological and morphological manner

Abstract The tomato (Solanum lycopersicum L.) is an annual vegetable cultivated all over the world. It faces biotic and abiotic stresses, such as salinity, in arid and semiarid regions. Investigating the relationship between physiological and economic traits, such as fruit yield, under stress conditions is necessary to identify tolerant genotypes. This study was conducted to identify tolerant tomato families according to the relationship between several important physiological, morphological and phenological traits. Twenty S3 families were cultivated in a factorial experiment (factor1: families and factor2: normal conditions and salinity stress) based on a randomized complete block design with three replications in 2019. Twenty physiological, agronomic and fruit-quality-related traits were investigated. Analysis of variance was used to prove the existing effective genetic diversity. Genetic diversity and the relationships between traits were graphically shown using heatmap clustering. Finally, genetic parameters, such as Pearson’s correlation, trait stability index and heritability were used to calculate the mathematical value of families using the Modified Analytical Hierarchy Process. Families exhibited different behaviours under normal and stress conditions. The tolerant families responded physiologically to the salt stress. Therefore, they reduced both cell membrane degradation and photosynthesis disruption by increasing proline, lycopene, carotenoid and sugar content. Therefore, fewer reductions in morphological traits were observed in these families. The most important traits based on the selection strategy were lycopene content, K+/Na+ ratio, days to flowering and biological yield. In addition, three families, H4/T/30/1, H1/T/12/5 and H1/T/47/4, were selected as the most suitable alternatives to construct the breeding population of the next generation.

Dynamics of parental attitudes of women before and after the birth of the first child

The demographic situation against the background of the reproductive attitudes of young people urgently requires research into the dynamics of parental attitudes, especially among women. Identification of potential resource areas and risk zones will make it possible to determine the main directions of psychological work with young people at the pre-parental and parental stages, strengthening the value of families and children among young people. The purpose of the study is to study the dynamics of parental attitudes before and after the birth of the first child. Sample: stage 1 (n = 50) married pregnant young women (first pregnancy in the third trimester, no history of complications); Stage 2 (n = 39): young mothers with a baby from 3 to 5 months. Data collection was carried out in the course of a longitudinal study using psychological testing methods: PARI E.S. Schaefer and R.K. Bella (adapted by T.V. Neshcheret); Ideas about the ideal parent R.G. Ovcharova; Relationship Color Test by A. Etkind. The results showed that women at the stage of early motherhood showed changes in all components of parental attitudes cognitive, emotional, behavioral. The greatest dynamics occur in the emotional sphere, which is characterized by ambivalence of experiences, and in the mothers self-awareness. The systems of attitudes towards the child and the maternal role (attitude towards oneself as mother and motherhood) are gradually differentiated. There is a restructuring of marital interaction and relations with the parental family: rapprochement with ones own mother while distancing from a marriage partner. Thus, at the stage of early parenthood, a woman needs to form the skills of emotional and volitional self-regulation and increase the level of communicative competence, which are of central importance for high-quality relationships with a child and a spouse.

Microalgae lipid extraction: a novel lab-scale method within a biorefinery approach (fractioning)

Extraction and fractioning of microalgal lipids have been recurrently studied because of the market value of certain lipid families (i.e. carotenoids and xanthophylls) and the opportunity that microalgal oils represent for obtaining biofuels. Most of the methods developed for the total extraction of microalgal lipids require a subsequent separation for the different families (i.e neutral lipids, polar lipids) to be quantified. Moreover, most of them use toxic and expensive solvents. In the present study less toxic solvents that are widely used in the industry, such as hexane, acetone and, ethanol were tested in different orders for the extraction of microalgal biomass of different lipid composition and content (i.e. three different levels of nutritional stress). A comparison of the methods proposed by Bligh and Dyer, Folch and, Hara and Radin is also presented. The new method achieves microalgal total lipid extraction and separation of the lipid families simultaneously.

ŞERʿİYYE SİCİLLERİNE GÖRE ANTAKYA’DA AİLENİN SOSYO-EKONOMİK YAPISI (19. YÜZYILIN SONLARINDAN 20. YÜZYILIN BAŞLARINA KADAR)

Bulunduğu zamana ve coğrafyaya göre değişiklikler gösteren aile kurumu, bir taraftan toplumun kültür yapısına göre şekillenirken diğer taraftan da toplumun sosyal ve ekonomik yapısını şekillendirir. Bu nedenle bir devletin tarihini anlayabilmek için o devletin toplum yapısını, toplum yapısını anlayabilmek için ise aile yapısını anlamak gerekir. Farklı millet ve inanç sistemlerini, geniş bir coğrafyada yüzyıllarca bünyesinde barındıran Osmanlı Devleti’nin toplumsal yapısının incelenmesi de bu yönüyle önem kazanmaktadır. Yaklaşık 400 yıl Osmanlı Devleti’nin hâkimiyeti altında kalan, Müslüman nüfus yanında gayrimüslim nüfusu da barındıran Antakya’da ailenin sosyo-ekonomik yapısına ilişkin bazı çalışmalar yapılmıştır. Ancak bu çalışmalar, 18 yüzyıl ile 19. yüzyılın son çeyreği arasındaki dönemi kapsamaktadır. Bu tarihten sonrasına ait özgün bir çalışma bulunmamaktadır. Yapılan bu çalışmayla mevcut eksikliğin giderilmesi amaçlanmıştır. Araştırmanın temel kaynağını, 1876-1911 yılları arasını içeren 40 ile 53 numaralar arasındaki toplam 14 adet Antakya Şerʿiyye Sicili oluşturmaktadır. 19. yüzyılın sonu ile 20. yüzyılın başlarını kapsayan dönem içerisinde Antakya’da bulunan ailelerin sosyo-ekonomik yapıları; mahkeme kayıtlarına yansıyan nikâh, mehir, boşanma, çocuklar için vasi ve nafaka tayini gibi dava örneklerinden; ailelerin çocuk sayıları, eş durumları, gelir düzeyleri, bırakılan miras, yaşadıkları evler ve kullandıkları eşyalar ise tereke kayıtlarından örneklerle tespit edilmeye çalışılmıştır. Bu dönem içerisinde Antakya’da; birden fazla kadın ile evli olan kişiler olmakla birlikte evliliklerin genelde tek eşle yapıldığı, ailelerin ortalama 3-4 çocuk sahibi olup hane nüfusunun 5-6 kişiden oluştuğu, evliliklerin boşanma ile sonuçlanması durumunda genellikle çocukları ve kadınları koruyan nafaka gibi tedbirlerin bazen erkekler için de kullanıldığı, ailelerin daha çok orta düzeyde bir ekonomik yapıya sahip olup ortalama miras değerlerinin 7-8 bin kuruş arasında olduğu, gerek Müslüman gerekse gayrimüslim ailelerin, aynı yaşam alanlarında benzer yaşayış şekilleri sergiledikleri sonucuna varılmıştır.

‘We discovered places we never used before’. Home and parenting geographies during the 2020 lockdowns in Italy and Greece

ABSTRACT The paper presents and discusses data from a qualitative study carried out in April and May 2020 with families under lockdown in Italy (N = 319) and Greece (N = 297). The research examined how confinement and restrictions on movement had impacted families’ everyday geographies (with a particular focus on ‘liminal’ places located between homes and public spaces, such as balconies, hallways, courtyards, backyards), as well as parents’ most valued public spaces and propensity (and modes) to use them. Data were analysed following a top-down thematic approach. The results suggest that restricted access to public spaces (as enforced during the Greek and Italian lockdowns) may influence the signification of domestic places, prompt remodulation of the dialectic between public and private spheres, and bring to light the social value of families’ (parents and children’s) experiences in public spaces.

Tripartite intensive intervention for prevention of rebleeding in elderly patients with hypertensive cerebral hemorrhage.

BACKGROUNDHypertensive cerebral hemorrhage (HICH) is the rupture and bleeding of vessels of the cerebral parenchyma caused by continuously elevated or violently fluctuating blood pressure. The condition is characterized by high disability and high mortality. Hematoma formation and resulting space-occupying effects following intracerebral hemorrhage are among the key causes of impaired neurological function and disability. Consequently, minimally invasive clearance of the hematoma is undertaken for the treatment of HICH because it can effectively relieve intracranial hypertension. Therefore, special attention should be given to the quality of medical and nursing interventions in the convalescent period after minimally invasive hematoma clearance.AIMThe study aim was to determine the value of intensive intervention, including doctors, nurses, and patient families, for the prevention of rebleeding in elderly patients with HICH during the first hospitalization for rehabilitation after the ictal eventMETHODSA total of 150 elderly HICH patients with minimally invasive hematoma evacuation in our hospital between May 2018 and May 2020 were selected and equally divided into two groups of 75 each by their planned intervention. The control group was given conventional nursing intervention and the observation group was given tripartite intensive intervention. The length of hospital stay, cost, complication rate, satisfaction rate, and rebleeding rate during hospitalization were recorded. Changes in cerebral blood flow indicators were recorded in both groups. Changes in the National Institutes of Health Stroke Scale (NIHSS) score, quality of life index (QLI) score, and health behavior score were evaluated at the National Institutes of Health.RESULTSDuration of hospitalization was shorter in the in the observation group than in the control group, the hospitalization cost was less than in the control group, and the rate of rebleeding during hospitalization was lower than in the control group (all P < 0.05). There were no significant differences between the two groups before treatment (all P > 0.05). The mean flow rate (Qmean) and mean velocity (Vmean) of the two groups increased (P < 0.05), and the dynamic resistance and peripheral resistance decreased (P < 0.05). The Qmean and Vmean in the intervention group were higher than those in the control group (P < 0.05). Moreover, the dynamic resistance and peripheral resistance of the blood vessels were also lower in the intervention group than in the control group (P < 0.05). The difference in health behavior scores between the two groups before treatment was not significant (P > 0.05). In both groups, the scores for healthy behaviors such as emotion control, medication adherence, dietary management, exercise management, and self-monitoring were higher after than before treatment (P < 0.05), and the scores of healthy behaviors in the intervention group were higher than those in the control group (P < 0.05). There was no significant difference in the NIHSS and QLI scores between the two groups before treatment (P > 0.05). The QLI scores of the two groups increased (P < 0.05), and the NIHSS scores decreased (P < 0.05). The QLI scores of the intervention group were higher than those of the control group (P < 0.05), and the NIHSS score was correspondingly lower than that of the control group (P < 0.05). The incidence of respiratory infections, pressure sores, central hyperpyrexia, and deep venous thrombosis was lower in the intervention group than in the control group. Accordingly, the satisfaction rate was higher in the treatment group than that in the control group (P < 0.05).CONCLUSIONIntensive intervention by doctors, nurses, and families of elderly patients with HICH reduced the rate of rebleeding during hospitalization. It also reduced the incidence of complications, promoted rehabilitation, improved the quality of life, and enhanced nerve function. Additionally, it improved satisfaction and promoted healthy behaviors.

Abstract 11825: The Association Between Frailty and Vascular Endothelial Growth Factor Families in Patients With Heart Failure: The PREHOSP-CHF Study

Background: Frailty is a complex clinical syndrome associated with ageing and chronic illness, and is common in heart failure (HF). Vascular endothelial dysfunction including maladaptive angiogenesis and lymphangiogenesis is involved in the pathogenesis of HF, and is also considered to be the causes of frailty. We investigated the association of vascular endothelial growth factor (VEGF) families, central regulators of angiogenesis and lymphangiogenesis, with frailty, and prognostic role of these cytokines in frail HF patients. Methods: We performed a multicenter prospective cohort study to determine the predictive value of VEGF families for prognosis among patients with HF. A total of 1,024 patients (mean age, 75.5 years, 58.7% male) were included in the analyses. Serum levels of VEGF, VEGF-C, VEGF-D, and soluble VEGF receptor-2 (sVEGFR-2) were measured. Frailty was assessed by Canadian Study of Health and Aging Clinical Frailty Scale (CFS). Results: A total of 256 (25.1%) patients had frailty (CFS≥5) at baseline. Frail patients were older, more likely female, and had lower body mass index, higher NYHA class, and higher rates of prior hospitalization for HF, HF with preserved ejection fraction, anemia, cerebrovascular disease, and dementia. N-terminal pro brain natriuretic peptide, high sensitivity troponin I, and high sensitivity C-reactive protein levels were higher in frail patients. During the 2-year follow-up, 211 all cause death occurred. In Kaplan-Maier analysis, frail patients showed significantly higher incidence of all-cause (hazard ratio [HR], 4.12; 95% confidence interval [CI], 3.14-5.42). Regarding VEGF families, frail patients had significantly lower levels of sVEGFR-2 and VEGF-C, and higher levels of VEGF-D. Multiple regression analysis revealed that VEGF-C had inverse correlation with CFS (P, 0.03). After adjusting for clinical confounders, a low VEGF-C level was independently associated with all-cause death in frail patients (HR, 0.74; 95%CI, 0.58-0.94 for 1-SD increase), but was not in non-frail patients (HR, 0.87; 95%CI, 0.64-1.14 for 1-SD increase) (P for interaction, 0.09). Conclusions: In HF patients, a low VEGF-C value was associated with frailty and was independent risk for all-cause death in frail patients.

Selection on lines and families of camels within Kazakh breed type of the Turkmen dromedary

This article is devoted to the research of productivity and monitor of breed value of lines and families of the Turkmen dromedary selected for genetic improvements. It was the first time when the selection of dromedaries within Kazakh breed used a selection according to the results of additional estimation of the index of milk production, the index of fertility and a ratio of wool clipping when they are bred on lines and families. The estimation of reproductive fertility of producers of the line “Jahn-leck 1” showed that the index of successful copulation equals to 92.4±0.6%. Females of the breeding stock Kyzyl of Turkmen dromedary had an index of milk production – 5.0±0.05, and the breeding stock «Kumkent» had an index of 4.1±0.1. Furthermore, it promotes the foundation of a selection herd of female camels of Kazakh breed having an index of lactation with the range of 90-120%, and their index of milk production varying from 4.5 to 6.5. The suggested index estimation allowed selecting females of Turkmen dromedary within the Kazakh breed having the highest index of milk production most precisely.

Improving transparent team communication with the ‘Glass Door’ decal communication tool: a mixed methods analysis of family and staff perspectives

ObjectiveTo determine the value and perspectives of intensive care unit (ICU) healthcare professionals (HCPs) and families about the Glass Door (GD) decal team communication tool.DesignQuality improvement methodology was used to...

Developing Family-School Partnerships in the Midst of Demographic Change: An Examination of Educators’ Attitudes, Values, and Beliefs and the Discourses They Shape

ABSTRACT This study examined educators’ attitudes, values, and beliefs about families and the development of family-school partnerships in demographically changing school and community contexts. Survey data were collected from 188 educators in nine school districts. In-depth interviews were conducted with four teachers, four leaders, and one parent liaison. Analysis revealed five themes: value of families; parent involvement and value of education; challenges families experience; onus for change; and, equity and power. Themes were pervasive across the data; however, how educators discussed the themes crafted two markedly different discourses (i.e., deficit and culturally responsive) about families. Leadership implications are discussed.

Prognostic role of Wnt and Fzd gene families in acute myeloid leukaemia.

Wnt‐Fzd signalling pathway plays a critical role in acute myeloid leukaemia (AML) progression and oncogenicity. There is no study to investigate the prognostic value of Wnt and Fzd gene families in AML. Our study screened 84 AML patients receiving chemotherapy only and 71 also undergoing allogeneic haematopoietic stem cell transplantation (allo‐HSCT) from the Cancer Genome Atlas (TCGA) database. We found that some Wnt and Fzd genes had significant positive correlations. The expression levels of Fzd gene family were independent of survival in AML patients. In the chemotherapy group, AML patients with high Wnt2B or Wnt11 expression had significantly shorter event‐free survival (EFS) and overall survival (OS); high Wnt10A expressers had significantly longer OS than the low expressers (all P < .05), whereas, in the allo‐HSCT group, the expression levels of Wnt gene family were independent of survival. We further found that high expression of Wnt10A and Wnt11 had independent prognostic value, and the patients with high Wnt10A and low Wnt11 expression had the longest EFS and OS in the chemotherapy group. Pathway enrichment analysis showed that genes related to Wnt10A, Wnt11 and Wnt 2B were mainly enriched in ‘cell morphogenesis involved in differentiation’, ‘haematopoietic cell lineage’, ‘platelet activation, signalling and aggregation’ and ‘mitochondrial RNA metabolic process’ signalling pathways. Our results indicate that high Wnt2B and Wnt11 expression predict poor prognosis, and high Wnt10A expression predicts favourable prognosis in AML, but their prognostic effects could be neutralized by allo‐HSCT. Combined Wnt10A and Wnt11 may be a novel prognostic marker in AML.

Additive genetic prediction for F3 families of common black beans (Phaseolus vulgaris L.) using linear mixed models

The aim of study is to estimate the variance components and genetic parameters (REML), as well as to predict the genetic value (BLUP) of F3 families of common black beans for the components of seed production. The experimental design was augmented blocks, where the 83 F3 families were arranged only in each block, and the commercial controls were organized in three replicates. The additive genetic effects were determinant for plant height and first pod insertion height. The pronounced effects of the environment are expressed for the number of pods, seeds and seed mass per plant. Potentiality in the selection of higher F3 families are revealed through the 2CBRS population for plant height and first pod insertion height, for the components of seed yield the selections should be directed to the populations 2CARS and 1FVRS. The number of seeds and seed mass per plant were potentiated in more than 28% of the selected F3 families, and pronounceable genetic gains are obtained by the selection of families 66, 65 and 67. The inferences obtained in this study present theoretical and practical foundation, and can be applied in future studies of breeding and production of common black bean seeds.

EVALUATION OF THE FAMILIES OF DAIRY HERD BY THE PRODUCTIVITY AND BREEDING VALUE

EVALUATION OF THE FAMILIES OF DAIRY HERD BY THE PRODUCTIVITY AND BREEDING VALUE

Determination of the Primordial Helium Abundance Based on NGC 346, an H ii Region of the Small Magellanic Cloud

Abstract To place meaningful constraints on Big Bang Nucleosynthesis models, the primordial helium abundance determination is crucial. Low-metallicity H ii regions have been used to estimate it because their statistical uncertainties are relatively small. We present a new determination of the primordial helium abundance, based on long-slit spectra of the H ii region NGC 346 in the small Magellanic cloud. We obtained spectra using three 409″ × 0.51″ slits divided into 97 subsets. They cover the range λλ3600–7400 of the electromagnetic spectrum. We used PyNeb and standard reduction procedures to determine the physical conditions and chemical composition. We found that for NGC 346 X = 0.7465, Y = 0.2505, and Z = 0.0030. By assuming ΔY/ΔO = 3.3 ± 0.7 we found that the primordial helium abundance is Y P = 0.2451 ± 0.0026 (1σ). Our Y P value is in agreement with the value of neutrino families, N ν , and with the neutron half-life time, τ n , obtained in the laboratory.

Noteworthy Professional News

Noteworthy Professional News

Genetic parameters of survival in four generations of Indian white shrimp (Fenneropeneaus indicus)

ABSTRACT This study evaluated the genetic variance for survival at harvest of Indian white shrimp (Fenneropenaeus indicus) using a pedigreed synthetic population generated upon collecting broodstock from different fishery grounds in Egypt. The estimated heritabilities (h 2 ± SE) of survival from generations G0 to G3 ranged from 0.144 ± 0.026 to 0.008 ± 0.030 using a model that included the common environmental effect (c 2). Low heritability (0.014 ± 0.015) was estimated across generations with the inclusion of common environmental effect (c 2). However, the h 2 of survival from G0 to G1 ranged from 0.569 ± 0.071 to 0.410 ± 0.011 when c 2 was not included. The genetic correlation for survival between different ponds from G0 to G3 was moderate to high (0.79 ± 0.042 to 0.83 ± 0.012) but significantly different (P < 0.05). There were low correlation coefficients (−0.237 ± 0.089 to 0.316 ± 0.073) between body weight estimated breeding value (EBV) and survival EBV of families in four generations.

Rediscovering the value of families for psychiatric genetics research.

As it is likely that both common and rare genetic variation are important for complex disease risk, studies that examine the full range of the allelic frequency distribution should be utilized to dissect the genetic influences on mental illness. The rate limiting factor for inferring an association between a variant and a phenotype is inevitably the total number of copies of the minor allele captured in the studied sample. For rare variation, with minor allele frequencies of 0.5% or less, very large samples of unrelated individuals are necessary to unambiguously associate a locus with an illness. Unfortunately, such large samples are often cost prohibitive. However, by using alternative analytic strategies and studying related individuals, particularly those from large multiplex families, it is possible to reduce the required sample size while maintaining statistical power. We contend that using whole genome sequence (WGS) in extended pedigrees provides a cost-effective strategy for psychiatric gene mapping that complements common variant approaches and WGS in unrelated individuals. This was our impetus for forming the "Pedigree-Based Whole Genome Sequencing of Affective and Psychotic Disorders" consortium. In this review, we provide a rationale for the use of WGS with pedigrees in modern psychiatric genetics research. We begin with a focused review of the current literature, followed by a short history of family-based research in psychiatry. Next, we describe several advantages of pedigrees for WGS research, including power estimates, methods for studying the environment, and endophenotypes. We conclude with a brief description of our consortium and its goals.

The Greek Divorce Law Reform of 1983 and Its Impact on Homemakers: A Social and Economic Analysis

In 1983, Greek Family Law was radically amended on the basis of gender equality and divorce law was liberalized, with the introduction of no-fault divorce and divorce by mutual consent. We aim to assess the potentially wide-ranging effects of the new divorce law on the social and economic status of homemakers in traditional, long-duration marriages. We reviewed a sample of 500 reported judicial decisions on maintenance and postdivorce distribution of marital property, finding that the new gender-neutral statutes on maintenance fail to protect the interests of homemakers after divorce. We identify judicial attitudes that misconstrue formal gender equality for substantive equality as a determining factor for such negative outcomes. We propose a new reliance-based model for Greek alimony law and illustrate that reliance is the most effective legal formula for acknowledging the nonpecuniary contributions of homemakers. Our research further demonstrates that homemakers are disadvantaged by the postdivorce distribution of marital property. We identified a number of problems that seriously compromise a homemaker's chances of receiving a fair share of marital acquests. The most prominent among them is that Greek courts do not apply clear-cut standards in evaluating a homemaker's domestic services, thus attaching a low value to their contributions within marriage. Yet another problem is that intangible assets (like the husband's postdivorce income and his pension benefits) are not designated as divisible marital property. We conclude by arguing that the reform was overall socially effective; however, it had an unintended negative impact on divorced homemakers. First, because the legislators did not include any special provisions on homemakers. Second, because judges have generally interpreted the new statutes as if men and women are always equal on divorce, and further, as if all women are similarly situated. To remedy these after-effects, we make specific proposals for future amendments. The central idea underlying these proposals is that divorce should be made more difficult for married couples with children. Lastly, we consider a number of measures that Greek policymakers can adopt in view of protecting divorced women and their children, while at the same promoting the social value of intact families. [This is an unpublished doctoral thesis submitted to the University of Chicago and supervised by Prof. Gary S. Becker, Judge Richard A. Posner and Prof. Mary A. Becker]

Increasing Awareness of Sudden Death in Pediatric Epilepsy Together.

* Abbreviation: SUDEP — : sudden unexpected (or unexplained) death in epilepsy persons The death of any child is tragic. When the death is sudden and unexpected, it can seem especially incomprehensible. Henry was 4 years old when he died only a few weeks after his epilepsy diagnosis; his parents were devastated and never knew that death could occur; no physician had discussed the possibility with them. Henry was an otherwise healthy child, had a history of febrile seizures, and died in his sleep before his epilepsy workup was complete and before his medication was likely therapeutic. Since Henry’s death 8 years ago, together and independently, Henry’s parents, pediatrician, and neurologist have sought understanding and opportunities to advance awareness and prevention around epilepsy-related mortality. These efforts have launched a multidisciplinary partnership between Children’s National Health System and the University of Virginia to develop an educational research program to systematically raise provider and patient awareness of sudden unexpected (or unexplained) death in epilepsy persons (SUDEP) and other risks associated with epilepsy. This article gives voice to these different experiences and underscores the value of families and providers working together to improve care and prevent death. Although epilepsy is a common childhood disorder, all of us were impacted by Henry, who died, suddenly and unexpectedly, as a result of his seizure disorder. Our partnership started with Henry’s mother, Henry’s pediatrician, and Henry’s neurologist and now includes an educational research program that incorporates parent advocacy, nursing, neuropsychology, psychiatry, neurology, and basic science expertise. As a bereaved mother, I was desperate to make sense out of our tragedy. I searched for understanding and connection to others who shared my experience and ultimately connected with other parents … Address correspondence to Madison M. Berl, PhD, Center for Neuroscience, Children’s National Health System, 111 Michigan Ave NW, Washington, DC 20010. E-mail: mberl{at}childrensnational.org