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Item Open Access A Qualitative Analysis of Family Support in HIV Care Management for Adolescents Living with HIV in Cape Town, South Africa(2021) Malo, Vincenzo FrancisBackground: South African adolescents living with HIV (ALWH) experience elevated risk for poor HIV-related outcomes due to challenges associated with HIV disease management. While previous research suggests that social support may mitigate poor HIV-related outcomes, we know little about the specific types of family social support that help ALWH achieve better health outcomes or how this support might be better facilitated. This study aimed to address this gap by characterizing the types of social support provided by family members to assist ALWH in their HIV care management.Methods: We conducted fifty-nine in-depth, semi-structured interviews with ALWH (n=20), their caregivers (n=19), and community stakeholders (n=20) in Cape Town, South Africa. Using deductive and then inductive thematic methods, we triangulated data from these three groups in NVivo to qualitatively analyze family social support. Results: We identified four types of family social support: instrumental support, appraisal support, emotional support, and informational support. Families provided crucial instrumental support through treatment reminders and attending clinic appointments with ALWH. Families also acted as strong sources of appraisal support to help ALWH reflect upon the importance of medication adherence by promoting future orientation and HIV normalization. Similarly, families facilitated adherence through emotional support, such as motivating ALWH and demonstrating interest in their health. Lastly, families offered informational assistance to educate adolescents about managing HIV treatment challenges, such as side effects. Conclusion: In characterizing family social support, our findings highlight sources of struggle and possible solutions to the challenges that ALWH face in their HIV care. Our results suggest that ALWH and providers rely heavily on families to distribute these four types of support in HIV care, emphasizing the importance of exploring how to better facilitate and replicate this support. Understanding these types of social support is a crucial step to identifying potential gaps in care and possible intervention strategies. As such, future research should inquire about the efficacy of incorporating these types of social support into interventions to assist ALWH in their HIV care management.
Item Open Access Anatomies of Kinship: Diversity in the Formal Structures of American Families(2014) Gauthier, Gertrude RobinAmerican family relations are formally defined through marriage and descent but these formal distinctions are inadequate to capture the diversity of contemporary family life. Recent demographic trends have led to a diversification of family structures. Alternative, and less institutionalized ties like co-residence and informal partnerships bind an increasing number of families. Clearly defined cultural models do not yet exist for these new relationships. During these demographic changes the cultural dominance of the single breadwinner model has been challenged by women's mass entry into the labor market. New models of fatherhood have begun to emerge and conventional parenting roles may be carried out in diverse ways. A new method is needed to capture the relational processes of new family forms and the heterogeneity of conventional ones.
I argue families' formal structures can be classified by the things their members do, and the time they share with each other. Network methods sort family structures into discrete types that capture differences in lived experiences. The distinctions differentiating family structures from each another reveal meaningful information about how families are organized in the contemporary context. The four substantive papers in this dissertation each contribute a different demonstration of this fundamental argument.
First, the method is developed in a familiar context, using conventional distinctions embedded in kinship terms to move one step beyond traditional analyses of the family. Traditional categorical approaches enumerate traditionally defined relationships. We ask instead how patterns of consanguinity and marriage actually combine in American households, making no assumptions about the importance of any particular relation or individual attribute.
The three papers that follow are further from the traditional categorical approach. I don't assume that descent and marriage are necessary elements of family relationships. Instead, relationship types are defined by patterns of activities that children do with their potential kin. I apply the method to three waves of time use diaries from the Child Development Supplement of the Panel Study of Income Dynamics. Children's relationships with both traditional and new kin types are heterogeneous, yet structured. Next I develop and test a predictive model of parent-child relationships. The results show that allowing salient relationship features to emerge from time use data is fundamental to understanding how parent-child relationships differ by parents' attributes and household characteristics.
Finally, I examine how relationship types cohere into families. Children have the same type of family when their families are composed of a similar set of relationship types. The relations within most family types are qualitatively similar to each other - if one relationship is broad (or perfunctory) the others are likely to be as well.
Item Embargo Anxious Care: Radioactive Uncertainty and the Politics of Life in Post-Nuclear Japan(2023) Cho, JieunSince the 2011 meltdown, the health of “Fukushima children” has become a problem for parents, politics, and future imaginaries in post-nuclear Japan. What are the ethical and political implications of making life around a child imperiled by radiation when (re)productivity of life must be remade in a compromised environment? This dissertation investigates (re)production of life in the wake of the Fukushima Daiichi nuclear disaster in Japan by studying the strivings of families who seek to raise healthy children amidst radiation as a condition of living: what I call “anxious care.” By foregrounding the family as a site for environmental struggles in an emerging politics of life, I examine the work of making children live against and within radiation, looking to consider the radical implications of caring for children in radioactive uncertainty. In particular, this project focuses on inner cities of Fukushima Prefecture that have been on the frontline of radiation debates for having been exposed to disaster-induced radiation while not designated for evacuation. Shifting focus to the edges of delimited disaster zones, I examine the multifaceted aftermath of the nuclear disaster, ranging from differentially altered forms of life conditioned by radioactive uncertainty, the unequal distribution of radiation risk through public/private organizations such as the family form, and the everyday impact of post-Fukushima radiation. Theorizing the stakes of living with nuclear risk as situated political ecologies which generates tensions and possibilities for new forms of life, this dissertation argues that notions of life are undergoing a moment of reconfiguration in post-nuclear Japan by both real-life families and the family form. In doing so, it contributes to critiquing and broadening the anthropological horizons of life amid environmental uncertainty in and beyond Japan.
Item Open Access Application of the Intervention Mapping protocol to develop Keys, a family child care home intervention to prevent early childhood obesity.(BMC Public Health, 2015-12-10) Mann, Courtney M; Ward, Dianne S; Vaughn, Amber; Benjamin Neelon, Sara E; Long Vidal, Lenita J; Omar, Sakinah; Namenek Brouwer, Rebecca J; Østbye, TrulsBACKGROUND: Many families rely on child care outside the home, making these settings important influences on child development. Nearly 1.5 million children in the U.S. spend time in family child care homes (FCCHs), where providers care for children in their own residences. There is some evidence that children in FCCHs are heavier than those cared for in centers. However, few interventions have targeted FCCHs for obesity prevention. This paper will describe the application of the Intervention Mapping (IM) framework to the development of a childhood obesity prevention intervention for FCCHs METHODS: Following the IM protocol, six steps were completed in the planning and development of an intervention targeting FCCHs: needs assessment, formulation of change objectives matrices, selection of theory-based methods and strategies, creation of intervention components and materials, adoption and implementation planning, and evaluation planning RESULTS: Application of the IM process resulted in the creation of the Keys to Healthy Family Child Care Homes program (Keys), which includes three modules: Healthy You, Healthy Home, and Healthy Business. Delivery of each module includes a workshop, educational binder and tool-kit resources, and four coaching contacts. Social Cognitive Theory and Self-Determination Theory helped guide development of change objective matrices, selection of behavior change strategies, and identification of outcome measures. The Keys program is currently being evaluated through a cluster-randomized controlled trial CONCLUSIONS: The IM process, while time-consuming, enabled rigorous and systematic development of intervention components that are directly tied to behavior change theory and may increase the potential for behavior change within the FCCHs.Item Open Access Ceramics After Sundown: My Family’s Jewish Diaspora Grief and Resilience(2023-04) Levin, LilyItem Open Access Child welfare agency ties to providers and schools and substance abuse treatment use by adolescents.(Journal of substance abuse treatment, 2011-01) Wells, R; Chuang, E; Haynes, LE; Lee, IE; Bai, YPolicy makers and advocates are increasingly encouraging child-serving organizations to work together. This study examined how child welfare agency ties with substance abuse treatment providers and schools correlated with substance abuse treatment for adolescents receiving child protective services. A sample of adolescents with substance use risk was extracted from a national survey of families engaged with child welfare. Logistic regressions with adjustments for complex survey design used child welfare agency ties to substance abuse treatment providers and schools to predict treatment. As expected, adolescents were more likely to report treatment when child protective services and substance abuse treatment were in the same agency and when child welfare agency directors reported joint planning with schools. However, child welfare agency agreements with substance abuse treatment providers were negatively associated with treatment. This unexpected finding implies that agencies may sometimes cooperate to address problems and to improve service utilization.Item Open Access Cohort Succession, Intergenerational Transmission, and the Decline of Religion in the United States(2019) Brauer, Simon GeorgeScholars over the past several decades have noted the resilience of religion in the United States (Chaves 2011; Gorski and Altınordu 2008; Hadden 1987:601–2; Presser and Chaves 2007), but many recognize that the youngest US cohorts are significantly lower on several religious characteristics than older cohorts (Hout and Fischer 2014; Putnam and Campbell 2012; Voas and Chaves 2016). Scholars have proposed several explanations for this trend, disagreeing about whether it is the result of a particular cultural moment or an ongoing process leading to even greater religious decline. Replicating Voas’ (2009) model of slow, predictable decline across cohorts, I find that, surprisingly, the US closely fits the same trajectory of religious decline as European countries, suggesting a shared demographic process as opposed to idiosyncratic change. Family dynamics are an important part of this story. Family characteristics are some of the most significant predictors of religious outcomes (Hoge, Petrillo, and Smith 1982; Smith and Denton 2005; Uecker and Ellison 2012), but only a few studies have examined how aggregate religious decline is shaped by family processes (Chaves 1991; Crockett and Voas 2006; Kelley and De Graaf 1997). Even fewer have done so using self-reported data from members of several generations of the same families (Bengtson et al. 2018; Bengtson, Putney, and Harris 2013; Smith and Denton 2005). I advance this line of research by decomposing within-family, inter-generational religious decline into components that can be attributed to factors within the family and those that cannot. Whereas the combination of individual and family characteristics explains the decline in religious service attendance within families, it does not explain much of the decline in self-rated religiosity, suggesting that the intergenerational transmission of religious behavior operates differently than the intergenerational transmission of internal sense of religiosity. I consider these findings in light of theory and research by developmental psychologists and sociologists of the family on what leads children to adopt (or not) their parents’ values, attitudes, and practices.
Item Open Access Comprehensive Support for Family Caregivers of Post-9/11 Veterans Increases Veteran Utilization of Long-term Services and Supports: A Propensity Score Analysis.(Inquiry : a journal of medical care organization, provision and financing, 2018-01) Shepherd-Banigan, Megan; Smith, Valerie A; Stechuchak, Karen M; Miller, Katherine EM; Hastings, Susan Nicole; Wieland, Gilbert Darryl; Olsen, Maren K; Kabat, Margaret; Henius, Jennifer; Campbell-Kotler, Margaret; Van Houtven, Courtney HaroldFamily caregivers are an important component of the long-term services and supports (LTSS) system. However, caregiving may have negative consequences for caregiver physical and emotional health. Connecting caregivers to formal short-term home- and community-based services (HCBS), through information resources and referrals, might alleviate family caregiver burden and delay nursing home entry for the patient. The aim of this study was to evaluate the early impact of the Program of Comprehensive Assistance for Family Caregivers (PCAFC) (established by P.L. 111-163 for family caregivers of seriously injured post-9/11 Veterans) on Veteran use of LTSS. A two-cohort pre-post design with a nonequivalent comparison group (treated n = 15 650; comparison n = 8339) was used to (1) examine the association between caregiver enrollment in PCAFC and any VA-purchased or VA-provided LTSS use among Veterans and (2) describe program-related trends in HCBS and institutional LTSS use. The comparison group was an inverse-propensity-score weighted sample of Veterans whose caregivers applied for, but were not accepted into, the program. From baseline through 24 months post application, use of any LTSS ranged from 13.1% to 17.8% for Veterans whose caregivers were enrolled in PCAFC versus from 3.8% to 5.3% for Veterans in the comparison group. Participation in PCAFC was associated with a statistically significant increased use of any LTSS from 1 to 24 months post application (over time odds ratios ranged from 2.71 [95% confidence interval: 2.31-3.17] to 4.86 [3.93-6.02]). Support for family caregivers may enhance utilization of LTSS for Veterans with physical, emotional, and/or cognitive conditions.Item Open Access Cultures of Emotion: Families, Friends, and the Making of the United States(2018) Cooper, Mandy L.“Cultures of Emotion: Families, Friends, and the Making of the United States” explores the centrality of families to the new republic’s economy and governing institutions in the post-Revolutionary period. In so doing, my work brings the insights of scholarship on the early modern period to the post-Revolutionary United States, where the literature has tended to focus on men and women as individuals, rather than understanding them as members of far-flung family networks. While focusing specifically on several prominent families based in North Carolina and Virginia, the dissertation shows that during this period, wealthy elites during this period had extensive interests in their states and the federal government. They identified so closely with these bodies that they collapsed their interests with the public interest and used their access to them to advance their families’ interests in the name of the public good. By folding the institutions of federal and state government into their family networks, the new republic’s elites organized their own lives and these developing institutions around the metaphor and idea of family. As this dissertation argues, these dynamics were built into the institutional structure of the new nation, creating a governing system intertwined with the familial networks of the elite.
The focus is on two elite families: the Coles of Virginia and the Camerons of North Carolina. Both families were prominent members of the southern elite with networks centered in the South that extended throughout the country and stretched across the Atlantic. Members of both networks held prominent positions in state and national government, and both networks had extensive and varied business interests.
This dissertation combines the history of the Atlantic World with women’s, women’s, economic, political, and legal history to explore the economic and political implications of the connections between the “private,” domestic world of the family and the “public” world of governance at the federal, state, and local levels. The focus on family and affective labor, combined with the contributions of recent work in legal history, recasts our understanding of economic and political development in this period. Examining the intersections of politics with family business networks in the antebellum United States reveals the limitations of the power of governing institutions, particularly at the state and federal level, and the interdependent relationship between elite family networks and government. Government was not a unified, monopolizing force. Rather, governing authority lay in different arenas—at the local, state, and federal levels, and elite families used their networks to access government at these levels to support their economic interests.
“Cultures of Emotion” uses affective labor as a lens through which to examine a unique blend of sources: personal, business, and political correspondence, as well as ledgers, bonds, and other business and political documents. The personal correspondence allows me to reconstruct the basic outlines of kinship networks by revealing the work that men and women did in creating and maintaining familial ties through performances of specific emotional norms. The personal, business, and political correspondence of women and men in the families I study reveals repeated elements in correspondence that served as performances of emotional kinship bonds, as well as conventions to follow. Following the connections established in this correspondence to the ledgers, bonds, and other statements of credit and debt between the network’s members uncovers the webs of credit and debt that sustained elite families. These business and political records underscore the importance of kinship in maintaining these webs of credit and debt and constitute an important link in understanding the way the network’s political and economic power rested on familial bonds and incorporated the institutions of state and federal government as a member, firmly situating the economic and political networks in the domestic realm. Such an approach recasts our understanding of the nineteenth-century United States, centering families in the work of governance and highlighting women’s central role in their families’ economic and political work.
Item Open Access Design, recruitment, logistics, and data management of the GEHA (Genetics of Healthy Ageing) project.(Exp Gerontol, 2011-11) Skytthe, A; Valensin, S; Jeune, B; Cevenini, E; Balard, F; Beekman, M; Bezrukov, V; Blanche, H; Bolund, L; Broczek, K; Carru, C; Christensen, K; Christiansen, L; Collerton, JC; Cotichini, R; de Craen, AJM; Dato, S; Davies, K; De Benedictis, G; Deiana, L; Flachsbart, F; Gampe, J; Gilbault, C; Gonos, ES; Haimes, E; Hervonen, A; Hurme, MA; Janiszewska, D; Jylhä, M; Kirkwood, TBL; Kristensen, P; Laiho, P; Leon, A; Marchisio, A; Masciulli, R; Nebel, A; Passarino, G; Pelicci, G; Peltonen, L; Perola, M; Poulain, M; Rea, IM; Remacle, J; Robine, JM; Schreiber, S; Scurti, M; Sevini, F; Sikora, E; Skouteri, A; Slagboom, PE; Spazzafumo, L; Stazi, MA; Toccaceli, V; Toussaint, O; Törnwall, O; Vaupel, JW; Voutetakis, K; Franceschi, C; GEHA consortiumIn 2004, the integrated European project GEHA (Genetics of Healthy Ageing) was initiated with the aim of identifying genes involved in healthy ageing and longevity. The first step in the project was the recruitment of more than 2500 pairs of siblings aged 90 years or more together with one younger control person from 15 areas in 11 European countries through a coordinated and standardised effort. A biological sample, preferably a blood sample, was collected from each participant, and basic physical and cognitive measures were obtained together with information about health, life style, and family composition. From 2004 to 2008 a total of 2535 families comprising 5319 nonagenarian siblings were identified and included in the project. In addition, 2548 younger control persons aged 50-75 years were recruited. A total of 2249 complete trios with blood samples from at least two old siblings and the younger control were formed and are available for genetic analyses (e.g. linkage studies and genome-wide association studies). Mortality follow-up improves the possibility of identifying families with the most extreme longevity phenotypes. With a mean follow-up time of 3.7 years the number of families with all participating siblings aged 95 years or more has increased by a factor of 5 to 750 families compared to when interviews were conducted. Thus, the GEHA project represents a unique source in the search for genes related to healthy ageing and longevity.Item Open Access Do specialty courts achieve better outcomes for children in foster care than general courts?(Eval Rev, 2013-02) Sloan, Frank A; Gifford, Elizabeth J; Eldred, Lindsey M; Acquah, Kofi F; Blevins, Claire EOBJECTIVE: This study assessed the effects of unified family and drug treatment courts (DTCs) on the resolution of cases involving foster care children and the resulting effects on school performance. METHOD: The first analytic step was to assess the impacts of presence of unified and DTCs in North Carolina counties on time children spent in foster care and the type of placement at exit from foster care. In the second step, the same data on foster care placements were merged with school records for youth in Grades 3-8 in public schools. The effect of children's time in foster care and placement outcomes on school performance as measured by math and reading tests, grade retention, and attendance was assessed using child fixed-effects regression. RESULTS: Children in counties with unified family courts experienced shorter foster care spells and higher rates of reunification with parents or primary caregivers. Shorter foster care spells translated into improved school performance measured by end-of-grade reading and math test scores. Adult DTCs were associated with lower probability of reunification with parents/primary caregivers. CONCLUSION: The shortened time in foster care implies an efficiency gain attributable to unified family courts, which translate into savings for the court system through the use of fewer resources. Children also benefit through shortened stays in temporary placements, which are related to some improved educational outcomes.Item Open Access Dyadic approach to post-stroke hospitalizations: role of caregiver and patient characteristics.(BMC neurology, 2019-11-04) Tyagi, Shilpa; Koh, Gerald CH; Luo, Nan; Tan, Kelvin B; Hoenig, Helen; Matchar, David B; Yoong, Joanne; Chan, Angelique; Lee, Kim En; Venketasubramanian, N; Menon, Edward; Chan, Kin Ming; De Silva, Deidre Anne; Yap, Philip; Tan, Boon Yeow; Chew, Effie; Young, Sherry H; Ng, Yee Sien; Tu, Tian Ming; Ang, Yan Hoon; Kong, Keng He; Singh, Rajinder; Merchant, Reshma A; Chang, Hui Meng; Yeo, Tseng Tsai; Ning, Chou; Cheong, Angela; Ng, Yu Li; Tan, Chuen SengAIM:To study the association of caregiver factors and stroke patient factors with rehospitalizations over the first 3 months and subsequent 3-12 months post-stroke in Singapore. METHODS:Patients with stroke and their caregivers were recruited in the Singapore Stroke Study, a prospective yearlong cohort. While caregiver and patient variables were taken from this study, hospitalization data were extracted from the national claims database. We used Poisson modelling to perform bivariate and multivariable analysis with counts of hospitalization as the outcome. RESULTS:Two hundred and fifty-six patient with stroke and caregiver dyads (N = 512) were analysed, with patients having spouse (60%), child (29%), sibling (4%) and other (7%) as their caregivers. Among all participants, 89% of index strokes were ischemic, 57% were mild in severity and more than half (59%) of the patients had moderate or severe disability post-stroke as measured on the Modified Rankin Scale. Having social support in the form of a foreign domestic worker for general help of caregiver reduced the hospitalization rate over 3 months post-stroke by 66% (IRR: 0.342; 95% CI: 0.180, 0.651). Compared to having a spousal caregiver, those with a child caregiver had an almost three times greater rate of hospitalizations over 3-12 months post-stroke (IRR: 2.896; 95% CI: 1.399, 5.992). Higher reported caregiving burden at the 3-month point was associated with the higher subsequent rate of hospitalization. CONCLUSION:Recommendations include the adoption of a dyadic or holistic approach to post-stroke care provision by healthcare practitioners, giving due importance to both patients with stroke and their caregivers, integrating caregivers in the healthcare system to extend the care continuum to include informal care in the community and provision of timely support for caregivers.Item Open Access Examining Health Care Access for Refugee Children and Families in the North Carolina Triangle Area.(North Carolina medical journal, 2020-11) Hunter, Kelly; Knettel, Brandon; Reisinger, Deborah; Ganapathy, Pranav; Lian, Tyler; Wong, Jake; Mayorga-Young, Danielle; Zhou, Ailing; Elnagheeb, Maram; McGovern, Melissa; Thielman, Nathan; Whetten, Kathryn; Esmaili, EmilyBACKGROUND Resettled refugees are at increased risk of poor health outcomes due to acculturation challenges, logistical barriers, experiences of trauma, and other barriers to care that are poorly understood. Refugee children may be particularly vulnerable due to disruptions in health, well-being, education, and nutrition during the resettlement process.METHOD To describe the health care barriers facing refugees in the North Carolina Triangle area (comprised of Durham, Chapel Hill, Raleigh, and their surrounding areas), we conducted three focus group interviews (in Arabic, French, and Swahili) with 25 refugee parents from Syria, Iraq, Central African Republic, the Democratic Republic of the Congo, and Chad. We also administered a survey to nine organizations that provide services for refugees.RESULTS Focus group responses highlighted the multidimensional nature of health care barriers for refugee families and children, encompassing challenges with acculturation, communication, transportation, finances, and health literacy. Organizations emphasized similar challenges and described their efforts to improve access to services through increased communication, coordination, and seeking new financial support for programs.LIMITATIONS Given the geographic focus of the study, results may not be generalizable to other populations and settings. Men spoke more than women in some focus groups, and participants may have been influenced by more vocal contributors. Furthermore, this study is limited by a lack of health outcomes data.CONCLUSIONS This study suggests that the health care needs of refugees living in the North Carolina Triangle area can be better met by providing comprehensive, coordinated, and culturally relevant care. This could include minimizing the number of visits by integrating multiple services under one roof, providing trauma-informed interpreters, and offering accessible transportation services.Item Restricted From Status to Contract: Domesticating Modernity in Wuthering Heights, The Mill on the Floss and Dracula(2011-04-04) Foreman, VioletaIn England, the nineteenth-century was a time of change. The social developments instigated by the French Revolution in France were making way across the channel, intensified by the technological innovation generated by the Industrial Revolution. As social hierarchies were altered by the rise of the middle class, so too was political organization disturbed with the passage of the Great Reform act of 1832. The final transition to a constitutional monarchy at home, together with the fall of the ancient Spanish, Chinese, Holy Roman, Portuguese and Mughal empires abroad, made the period a time of unprecedented and fundamental change. Modernity, with a unique concentration on the present rather than the glorification of the past found in classicism or romanticism, would become the measure of social life. While the principles that would define modernism were evolving, as Bram Stoker notes, “the old centuries had, and have, powers of their own which mere ‘modernity’ cannot kill.” The literature of the time reflected the transitional phase within the realism of the newly popular medium – the novel. Exploring the role of self and society, the novel, with the genre of realism as its distinguishing feature, allowed for a theoretic space in which social change could be understood and mastered. With antecedents in autobiographic and epistolary works, the novel offered an intimate and ‘real’ microcosm of the contemporary social landscape, contributing new, or literally novel, case studies that reflect how individuals could, and did, come to terms with modernity. Literary critics often use twentieth-century theories of social or psychological development to explicate character motivations or plot progression in the nineteenth-century. Yet, would not such analysis be more fruitful if the works were read in context of Victorian theory that is able to offer a glimpse into how Victorians themselves understood their relation to history and their role in society? To capture this very notion I will turn to the Victorian comparative jurist and historian Sir Henry Maine and his book Ancient Law (1861), which will provide the theoretical framework to my analysis. Henry Maine is pertinent to this study because his legal theories reveal how writers of the period theorized the emergence of modernity. The novels I have chosen precede, are concurrent with, and follow the publication of Maine’s work, so that the impact and progression of social development can be perceived over the span of the century. It is known that George Eliot read Maine’s work and thus his influence can be more directly surmised in The Mill on the Floss. By the time Bram Stoker published Dracula in 1897, Maine’s theories were ubiquitous and although it is unknown whether the author encountered Maine’s work personally, the ideas put forth in Ancient Law would inevitably have influenced Stoker via popular culture. In the case of Emily Brontë, however, Wuthering Heights predates the insight offered by Maine, but in some ways it follows Maine’s thesis. The work of both authors can be seen as a response to the issues of 1840s-1850s. The move from status to contract that Maine identified, was not isolated to the time of his publication, but was the impetus behind the French Revolution, and the ideals of liberté, égalité, fraternité that were expressed almost a century earlier. While Emily Brontë, unlike George Eliot, would not have read Maine’s work, the social changes later identified by Maine could not have escaped her. Wuthering Heights explores concepts later solidified in Ancient Law and thus Maine’s theory is critical in explicating the novel. The achievement of Henry Maine is perhaps best summarized by John Hartman Morgan who introduced Ancient Law with the following lines: Published in 1861, it immediately took rank as a classic, and its epoch-making influence may not unfitly be compared to that exercised by Darwin's Origin of Species. The revolution effected by the latter in the study of biology was hardly more remarkable than that effected by Maine’s brilliant treatise in the study of early institutions. Discussing the development of law in the nineteenth century A.W.B. Simpson went so far as to claim that Henry Maine “wrote the only legal best seller of that, or perhaps any other century.” Immensely well written, the book had a cross-generational appeal, as well as the propensity to reference multiple topics fashionable at the time. It participated in the contemporary debate about progress, as Maine sought “constantly to assess whether or not certain practices encouraged or impeded the development of societies.” Unlike previous, prominent jurists, such as Jeremy Bentham and John Austin, who perceived law as a wholly abstract entity “independent of any particular place in which it functions,” Maine understood law as inextricable from social practices and historical events. Hailed as one of the forefathers of modern sociology of law, as well as anthropology, Maine’s project was to trace the emergence and development of the modern concepts of contract and the Individual. By using Maine’s work, we are able to understand the status quo and status quo ante as Victorians themselves did. It is important to note, however, that Ancient Law divulges the evolution of modern law from an earlier Roman prototype, rather than analyzing ancient jurisprudence in isolation. Indeed, Maine’s objective is “to indicate some of the earliest ideas of mankind, as they are reflected in Ancient Law, and to point out the relation of those ideas to modern thought (italics mine).” The transformations his book takes into account can be said to project the metamorphosis of his own culture onto that of antiquity. The need to rationalize the breach between modes of association is evident in the work of Maine and the literary authors in question. While Brontë, Eliot, and Stoker address the changing social landscape in the private sphere, Maine does so in the public. Putting the texts into dialogue will reveal a more complete understanding of how the novelists rationalized the developments of the milieu. By extrapolating Maine’s theories of social progression and applying them to Wuthering Heights, The Mill on the Floss, and Dracula, we are able to understand character motivations as products of complex historic transformations. In the pre-modern past, social and economic life was organized in terms of kin. The attainment of prestige and influence of certain independent, but consanguine groups, over time, led to the development of aristocracies. In history, membership in this privileged class offered status and power, but as Maine argues, its benefits were bestowed at the cost of individualization. At such a point in societal development, according to Maine, a person’s “individuality was swallowed up by his family,” never was he “regarded as himself, as a distinct individual.” Thus, a society like ancient Rome, “[had] for its units, not individuals, but groups of men united by the reality or fiction of blood-relationship.” Modernity, however, provided an opportunity for volte-face; it nurtured individualization. In multi-national, multi-ethnic imperial societies, like Imperial Rome and Modern Britain, kinship was no longer a viable way of social organization. In Britain, “the decline of kinship solidarities was understood as a necessary consequence of the economic specialization and bureaucratic rationalism associated with modernity and industrial development.” Status was no longer “colored by, the powers and privileges anciently residing in the Family,” as was the case in ancient Rome and pre-industrial England, according to Maine. Instead, there appeared a “gradual dissolution of family dependency,” replaced by “the growth of individual obligation in its place.” As Maine concisely stated, “the movement of progressive societies has hitherto been a movement from Status to Contract.” Contract refers to the “tie between man and man which [replaced] by degrees those forms of reciprocity in rights and duties which have their origin in the Family.” The “free agreement of Individuals” superseded ties of affinity. With the move towards a contract-based society came new forms of social association. People were no longer grouped though blood, rather, they were organized via the places they shared. The move from consanguinity to contiguity was crucial to the individualization of modern society. Maine defined the development of social categories that the novels explore in the microcosm of a fictional reality. In novels we are able to see Maine’s ideas set in motion, affect characters as they would real people, and determine a range of outcomes depending on the characters’ individual proclivities, prejudices, adaptive capacities and environment. The genre of realism that gained prominence in the nineteenth-century’s prevailing medium, the novel, allowed for “new realities” that mirrored the non-fictional world, but which also attempted to solve or fathom change. This need for reflection is a search for something to ground reality in a world that was rapidly and fundamentally changing from old sensibilities of custom, family ties, nobility, and other sentiments of the old order, to the new rationale of independence in the public and private spheres. Maine’s narrative is theoretic in nature and seeks to give meaning to the nineteenth-century developments that the novelists addressed within the private spheres of each narrative. The novel’s relation to the social is unique, for it can be both descriptive and speculative, without being merely reflexive. It is able to go beyond mere representation by exploring novel scenarios in which new realities pose new challenges for the characters, and offer new ways of mastering social change. While Maine abstracted the development of the Individual in law, the novels depicted his relation to society. In the chapter on Wuthering Heights, I identify Heathcliff as a product of both antiquity and modernity, which differs from the critical precedent that attempts to pigeonhole his identity. At the outset, I explore the implications of his absent surname, which I argue qualifies him as an individual who is independent from familial ties. I then explore the subject of kinship, particularly the ways in which the adoption of individuals into the family unit, discussed by Maine, is played out in narrative form of Wuthering Heights. Additionally, I argue that there is no clear marker in the novel to identify which moment in history the Heights belongs to, for it could function as both a feudal and modern manifestation of an estate. In the third section, I look at Heathcliff’s largely capitalistic maneuvering. By targeting the Linton and Earnshaw families Heathcliff is acting as an individual capitalist pivoted against the old symbol of social order – the family – as identified by Maine. Next, I analyze Heathcliff’s entanglement with revenge and patriarchy both of which cast him as an individual tied to ancient forms of social relations. Finally, in the last section, I take on the subject of Hareton and Catherine, arguing that their union is characterized by the creation of a nuclear family, one that is independent from generational ties and its symbols in the form of heirlooms. In the second chapter, I argue that Eliot’s realism in The Mill on the Floss embarks on a demystification of ancient social paradigms, focusing on the evolution of power, function, and structure of the family. The “givens” of the past familial social structure are no longer viable, according to Eliot, so that the archetypes of Gemeinschaft – consanguinity and hereditary status – are undermined in the novel. In their place, Eliot introduces a new kind of “objectivity,” in which I suggest, identity is no longer colored by family name, status is not derived from ancestry, education is removed from family dominion, and extended kinship alliances are supplanted by the nuclear family. In The Mill on the Floss this new “objectivity” is firstly exemplified by Mr. Tulliver’s lawsuit and Mr. Deane’s rise to prominence, both of which signify the rise of contractual modes of association outside the bounds of status derived from heredity. Secondly, the new order is epitomized by Tom’s remote education, which, I will argue, signifies the birth of the Tulliver nuclear family. This differs from Joshua Esty’s argument, which identifies the premature birth of the Tulliver nuclear family as the result of the bankruptcy. Thirdly, the new objectivity is represented by Mrs. Glegg’s financial independence, a point contrary to critical precedent thus far, which places Mrs. Glegg in the “givens” of the past social structure. I will prove that Mrs. Glegg’s financial autonomy is not only a foil to Mrs. Tulliver’s fiscal dependency, but Eliot’s commentary on women’s property rights. Finally, I will discuss the Dodson family as an example of the status quo ante that is not entirely untouched by the new objectivity, as well as Maggie’s ahistoric station as a consequence of insufficient discernment. Focusing the discussion on secondary characters, I hope to avoid the idiosyncratic tendency of many scholars who center their study exclusively on Maggie. Invoking the theories of Eliot’s contemporary, Henry Maine, I will show the ways in which the subjects of Eliot’s social experiment grapple with individuation wrought by modernity and obligation to consanguinity imposed by kinship. In the chapter on Dracula, I argue that the Count displays dualistic tendencies not unlike Maggie and Heathcliff. First, I analyze the relations of the human characters stressing the egalitarian nature of their union and identify Quincey Jr. as a foil to Dracula. Secondly, I turn to the family structure of the un-dead, classifying their union in terms of Maine’s theory concerning the adoption of individuals into the family unit. I then explicate the familial roles arguing that not only does incest cast the coterie in an antiquated light, but that the type of incest committed can further tie the union to an older model of social relations, explored in Romanticism. In the section on Dracula’s domesticity and sociality, I identify his opulent castle, as well as his commitment to hospitality and revenge, as antiquated penchants that reveal the Count’s reliance on outmoded social obligations. In the following section, the discussion on patriarchy and nationality centers on Dracula’s understanding of society, which reflects Maine’s theories of consanguinity and contiguity. The final section focuses on the juxtaposition of Dracula’s embodiment of the family corporation, with the individuality he displays in his single-handed invasion of England. Coming to terms with modernization and the resulting social evolutions are the subjects that Brontë, Stoker, and Eliot explore, whether consciously or unconsciously, in their respective novels. The temporal setting of both Wuthering Heights (1847) and The Mill on the Floss (1860) is antecedent to the novels’ publication, while Dracula’s (1897) setting is conspicuously concurrent. If looking back is a form of coming to terms with the present, Brontë and Eliot had, perhaps, more reason to do so, for at the time of the novels’ publication the gears of change were spinning arguably faster, fueled by its novelty, while at the fin-de-siècle, when Stoker penned Dracula, pervasive change was ubiquitous requiring less rationalization. Stoker, of course, is no exception, for he too turned to antiquity, and in particular, the medieval past in constructing the novel. Even Maine, as discussed previously, referred to the ancient Roman jurisprudence to draw comparison and contrast to modern law. Rationalizing modern developments by turning to the stability of antiquity is a pervasive theme in the nineteenth-century. As people grapple with modern advances in virtually every area of life, the past provides a safe haven to which habit or fear often reverts. Indeed, the main, and even some secondary, characters of the three novels repeatedly conflate antiquity and modernity. They, however, must pay with their lives for their muddled fluctuations, for regression cannot belong to a world of progress, and if survival of the fittest truly describes the human condition then in the case of these novels the fittest are the most adept at assuming change.Item Open Access Future living arrangements of Singaporeans with age-related dementia.(International psychogeriatrics, 2012-10) Thompson, James P; Riley, Crystal M; Eberlein, Robert L; Matchar, David BBackground
With rapid aging, Singapore faces an increasing proportion of the population with age-related dementia. We used system dynamics methodology to estimate the number and proportion of people with mild, moderate, and severe dementia in future years and to examine the impact of changing family composition on their likely living arrangements.Methods
A system dynamics model was constructed to estimate resident population, drawing birth and mortality rates from census data. We simulate future mild, moderate, and severe dementia prevalence matched with estimates of total dementia prevalence for the Asian region that includes Singapore. Then, integrating a submodel in which family size trends were projected based on fertility rates with tendencies for dependent elderly adults with dementia to live with family members, we estimate likely living arrangements of the future population of individuals with dementia.Results
Though lower than other previous estimates, our simulation results indicate an increase in the number and proportion of people in Singapore with severe dementia. This and the concurrent decrease in family size point to an increasing number of individuals with dementia unlikely to live at home.Conclusions
The momenta of demographic and illness trends portend a higher number of individuals with dementia less likely to be cared for at home by family members. Traditions of care for frail elderly found in the diverse cultures of Singapore will be increasingly difficult to sustain, and care options that accommodate these demographic shifts are urgently needed.Item Open Access Genome-wide linkage analysis of cardiovascular disease biomarkers in a large, multigenerational family.(PLoS One, 2013) Nolan, Daniel; Kraus, William E; Hauser, Elizabeth; Li, Yi-Ju; Thompson, Dana K; Johnson, Jessica; Chen, Hsiang-Cheng; Nelson, Sarah; Haynes, Carol; Gregory, Simon G; Kraus, Virginia B; Shah, Svati HGiven the importance of cardiovascular disease (CVD) to public health and the demonstrated heritability of both disease status and its related risk factors, identifying the genetic variation underlying these susceptibilities is a critical step in understanding the pathogenesis of CVD and informing prevention and treatment strategies. Although one can look for genetic variation underlying susceptibility to CVD per se, it can be difficult to define the disease phenotype for such a qualitative analysis and CVD itself represents a convergence of diverse etiologic pathways. Alternatively, one can study the genetics of intermediate traits that are known risk factors for CVD, which can be measured quantitatively. Using the latter strategy, we have measured 21 cardiovascular-related biomarkers in an extended multigenerational pedigree, the CARRIAGE family (Carolinas Region Interaction of Aging, Genes, and Environment). These biomarkers belong to inflammatory and immune, connective tissue, lipid, and hemostasis pathways. Of these, 18 met our quality control standards. Using the pedigree and biomarker data, we have estimated the broad sense heritability (H2) of each biomarker (ranging from 0.09-0.56). A genome-wide panel of 6,015 SNPs was used subsequently to map these biomarkers as quantitative traits. Four showed noteworthy evidence for linkage in multipoint analysis (LOD score ≥ 2.6): paraoxonase (chromosome 8p11, 21), the chemokine RANTES (22q13.33), matrix metalloproteinase 3 (MMP3, 17p13.3), and granulocyte colony stimulating factor (GCSF, 8q22.1). Identifying the causal variation underlying each linkage score will help to unravel the genetic architecture of these quantitative traits and, by extension, the genetic architecture of cardiovascular risk.Item Open Access Home is Where the Hurt Is: Racial Socialization, Stigma, and Well-Being in Afro-Brazilian Families(2012) Freeman, Elizabeth HordgeThis dissertation examines racial socialization in Afro-Brazilian families in order to understand how phenotypically diverse families negotiate racial hierarchies and ideologies of white supremacy. As an inductive, qualitative project, this research is based on over fourteen months of ethnographic fieldwork in Salvador, Bahia, Brazil in fifteen poor and working-class Bahian families and 116 semi-structured interviews with family members and informants. Findings suggest that one of the most prominent features of racial socialization is the pervasive devaluation of black/African influences, which is conveyed through implicit and explicit messages as well as concrete practices (including rituals) that promote the stigmatization of negatively valued racialized physical features. The study reveals a pattern of unequal distribution of affection based on racial appearance (phenotype), which is evident in parent-child, sibling, extended family, and romantic relationships. Findings suggest that negative appraisals of racial phenotype may significantly compromise affective bonds in families and have social psychological consequences impacting self-esteem and sense of belonging, while also eliciting suicidal ideations and anxieties. These outcomes are most pronounced for Afro-Brazilian females. Racial socialization also conveys the "strategically ambiguous" logic of color and racial classification, uncritically exposes family members to racist messages, jokes, and stereotypical images of Afro-Brazilians, and encourages cultural participation that superficially valorizes Afro-Brazilian culture and fosters nationalism, rather than racial identity. In contrast to traditional findings of racial socialization in the U.S., messages valorizing racial heritage are rare and efforts to prepare family members for bias rely on universal terms. Families do employ counter-discourses and creative strategies of resistance; and so, racial socialization is characterized by practices that reflect both resistance and accommodation to racial hierarchies. I conclude that racial socialization in families is influenced by and sustains racialization processes that maintain the broader system of white supremacy. Contrary to how racial socialization has been framed as having a purely protective role in families, this study illustrates how it may disadvantage blacks vis-à-vis whites and uniquely stigmatizes the most "black-looking" family members vis-à-vis those who more closely approximate an idealized (whiter) somatic norm. Future studies should triangulate data on racial socialization from other regions of the Americas.
Item Open Access Identifying treatment effects of an informal caregiver education intervention to increase days in the community and decrease caregiver distress: a machine-learning secondary analysis of subgroup effects in the HI-FIVES randomized clinical trial.(Trials, 2020-02) Shepherd-Banigan, Megan; Smith, Valerie A; Lindquist, Jennifer H; Cary, Michael Paul; Miller, Katherine EM; Chapman, Jennifer G; Van Houtven, Courtney HBackground
Informal caregivers report substantial burden and depressive symptoms which predict higher rates of patient institutionalization. While caregiver education interventions may reduce caregiver distress and decrease the use of long-term institutional care, evidence is mixed. Inconsistent findings across studies may be the result of reporting average treatment effects which do not account for how effects differ by participant characteristics. We apply a machine-learning approach to randomized clinical trial (RCT) data of the Helping Invested Family Members Improve Veteran's Experiences Study (HI-FIVES) intervention to explore how intervention effects vary by caregiver and patient characteristics.Methods
We used model-based recursive partitioning models. Caregivers of community-residing older adult US veterans with functional or cognitive impairment at a single VA Medical Center site were randomized to receive HI-FIVES (n = 118) vs. usual care (n = 123). The outcomes included cumulative days not in the community and caregiver depressive symptoms assessed at 12 months post intervention. Potential moderating characteristics were: veteran age, caregiver age, caregiver ethnicity and race, relationship satisfaction, caregiver burden, perceived financial strain, caregiver depressive symptoms, and patient risk score.Results
The effect of HI-FIVES on days not at home was moderated by caregiver burden (p < 0.001); treatment effects were higher for caregivers with a Zarit Burden Scale score ≤ 28. Caregivers with lower baseline Center for Epidemiologic Studies Depression Scale (CESD-10) scores (≤ 8) had slightly lower CESD-10 scores at follow-up (p < 0.001).Conclusions
Family caregiver education interventions may be less beneficial for highly burdened and distressed caregivers; these caregivers may require a more tailored approach that involves assessing caregiver needs and developing personalized approaches.Trial registration
ClinicalTrials.gov, ID:NCT01777490. Registered on 28 January 2013.Item Open Access Individuals with mutations in XPNPEP3, which encodes a mitochondrial protein, develop a nephronophthisis-like nephropathy.(J Clin Invest, 2010-03) O'Toole, JF; Liu, Y; Davis, EE; Westlake, CJ; Attanasio, M; Otto, EA; Seelow, D; Nurnberg, G; Becker, C; Nuutinen, M; Kärppä, M; Ignatius, J; Uusimaa, J; Pakanen, S; Jaakkola, E; van den Heuvel, LP; Fehrenbach, H; Wiggins, R; Goyal, M; Zhou, W; Wolf, MT; Wise, E; Helou, J; Allen, SJ; Murga Zamalloa, CA; Ashraf, S; Chaki, M; Heeringa, S; Chernin, G; Hoskins, BE; Chaib, H; Gleeson, J; Kusakabe, T; Suzuki, T; Isaac, RE; Quarmby, LM; Tennant, B; Fujioka, H; Tuominen, H; Hassinen, I; Lohi, H; van Houten, JL; Rotig, A; Sayer, JA; Rolinski, B; Freisinger, P; Madhavan, SM; Herzer, M; Madignier, F; Prokisch, H; Nurnberg, P; Jackson, PK; Jackson, P; Khanna, H; Katsanis, N; Hildebrandt, FThe autosomal recessive kidney disease nephronophthisis (NPHP) constitutes the most frequent genetic cause of terminal renal failure in the first 3 decades of life. Ten causative genes (NPHP1-NPHP9 and NPHP11), whose products localize to the primary cilia-centrosome complex, support the unifying concept that cystic kidney diseases are "ciliopathies". Using genome-wide homozygosity mapping, we report here what we believe to be a new locus (NPHP-like 1 [NPHPL1]) for an NPHP-like nephropathy. In 2 families with an NPHP-like phenotype, we detected homozygous frameshift and splice-site mutations, respectively, in the X-prolyl aminopeptidase 3 (XPNPEP3) gene. In contrast to all known NPHP proteins, XPNPEP3 localizes to mitochondria of renal cells. However, in vivo analyses also revealed a likely cilia-related function; suppression of zebrafish xpnpep3 phenocopied the developmental phenotypes of ciliopathy morphants, and this effect was rescued by human XPNPEP3 that was devoid of a mitochondrial localization signal. Consistent with a role for XPNPEP3 in ciliary function, several ciliary cystogenic proteins were found to be XPNPEP3 substrates, for which resistance to N-terminal proline cleavage resulted in attenuated protein function in vivo in zebrafish. Our data highlight an emerging link between mitochondria and ciliary dysfunction, and suggest that further understanding the enzymatic activity and substrates of XPNPEP3 will illuminate novel cystogenic pathways.Item Open Access Infant and Toddler Child-Care Quality and Stability in Relation to Proximal and Distal Academic and Social Outcomes.(Child development, 2020-11) Bratsch-Hines, Mary E; Carr, Robert; Zgourou, Eleni; Vernon-Feagans, Lynne; Willoughby, MichaelThis study considered the quality and stability of infant and toddler nonparental child care from 6 to 36 months in relation to language, social, and academic skills measured proximally at 36 months and distally at kindergarten. Quality was measured separately as caregiver-child verbal interactions and caregiver sensitivity, and stability was measured as having fewer sequential child-care caregivers. This longitudinal examination involved a subsample (N = 1,055) from the Family Life Project, a representative sample of families living in rural counties in the United States. Structural equation modeling revealed that children who experienced more positive caregiver-child verbal interactions had higher 36-month language skills, which indirectly led to higher kindergarten academic and social skills. Children who experienced more caregiver stability had higher kindergarten social skills.