A história da Alemanha foi profundamente marcada por fatos como a queda do Muro de Berlim (1989) e a Reunificação do país (1990). Desde então, as representações artísticas não poderiam deixar de retratar esses acontecimentos e suas consequências. Entre elas, a literatura e o cinema alemães têm se ocupado em vários momentos de tais fatos históricos e das mudanças deles decorrentes. De todas as vertentes literárias e cinematográficas que se destacaram nestas últimas duas décadas, a memorialística, ou seja, a preocupação em resgatar e preservar a memória nacional e pessoal as lembranças coletivas e individuais, e também familiares tem se mostrado presente e significativa em suas produções. Relembrar o passado pode ser uma forma não apenas de analisá-lo e compreendê-lo melhor como também de manter vivas certas figuras (entes queridos) através das lembranças. A narrativa assume, portanto, um importante papel ao combater a morte e tudo o que ela representa: superando a perda, procurando evitar o esquecimento e ensinando a aceitar as transformações, a fim de realizar o trabalho do luto. As obras analisadas nesta tese se encaixam de algum modo na categoria acima e oferecem elementos históricos e narrativos que estabelecem um diálogo entre elas, tornando possível um estudo comparativo. Embora se trate de duas obras independentes: um livro de Jakob Hein Vielleicht ist es sogar schön (2004) e de um filme de Wolfgang Becker Good bye, Lenin! (2003) os quais não originaram um ao outro, é possível encontrar pontes (elementos comuns) que as aproximam. Deste modo, o objetivo desta tese é analisar a estrutura narrativa das obras, verificando o papel do narrador, as questões históricas e o tema da morte no livro e no filme. Para tanto, foram usados como fundamento teórico essencialmente os textos de Todorov, Genette, Bordwell, Bandeira, Freud. / The history of Germany was deeply marked by facts like the fall of the Berlin Wall (1989) and the Reunification of the country (1990). Since then, the depicting of these events and their consequences has not been left out by artistic representations. Among those, German literature and cinema, at various moments, have been concerned with such historical facts and the changes originated with them. Of all the literary and cinematographic trends which have stood out in the last two decades, the memorialistic one, i.e. the concern with retrieving and preserving both national and personal memory the collective and individual recollections, and family ones as well has been present and significant in its productions. Remembering the past may be a way to analyze and better understand it as well as keeping certain figures (beloved ones) alive through memories. Therefore, narrative takes a very important part in fighting death and everything it represents: overcoming loss, trying to avoid oblivion, and teaching how to accept changes, in order to fulfill the elaboration of mourning. The works analyzed in this thesis somehow fit the category above and provide historical and narrative elements which establish a dialogue between them, making a comparative study possible. Although these are two independent works: a book by Jakob Hein Vielleicht ist es sogar schön (2004) and a film by Wolfgang Becker Good bye, Lenin! (2003) which have not originated each other, it is possible to find bridges (common elements) which bring them close together. Thus, the objective of this thesis is to analyze the narrative structure of the works, studying the role of the narrator, the historical questions, and the theme of death in both the book and the film. To achieve that, texts by Todorov, Genette, Bordwell, Bandeira, Freud were used as theoretical basis.

Made available in DSpace on 2016-04-25T19:20:19Z (GMT). No. of bitstreams: 1 Soemis Martinez Guzman.pdf: 565836 bytes, checksum: 38ae2b66e1ca23917b4056a15be17a91 (MD5) Previous issue date: 2011-12-07 / Coordenação de Aperfeiçoamento de Pessoal de Nível Superior / Ernest Becker targeted to understand the human condition by stating that the fear of death is the terror installation at the psychological base of man, from this realization he produced a work constituted by a synthesis of thoughts based on Kierkegaardian philosophy and psychoanalysis derived from Freud and his collaborators, with emphasis on Otto Rank, and a Darwinian evolution approach thus characterizing his interdisciplinarity. He believed it to be necessary the perception of being and society the true knowledge base in the description of the motivation that takes us to our condition. For this, he suggested that the fear of death and its denial are universal fundamental facts for every human activity and that the heroism product of this fear is the main human problem. As a starting point he uses the problem of heroism in contemporaneous society and shows the denial of finitude in modern culture. So, in its quest for transcendence, humanity creates symbols which further distances, from its perception of reality as species / Ernest Becker dedicou-se à compreensão da condição humana afirmando ser o medo da morte a instalação do terror nas bases psicológicas do homem. A partir dessa constatação, produziu um trabalho constituído por uma síntese de pensamentos com base na filosofia Kierkegaardiana, na psicanálise Freudiana e de seus colaboradores, destacando Otto Rank e a uma visão darwinista evolutiva caracterizando sua interdisciplinaridade. Acreditava ser necessária a percepção do ser e da sociedade para a base geradora de conhecimento verdadeiro na descrição da motivação que nos leva à nossa condição. Para tanto, sugeriu ser o medo da morte e a sua negação fatos fundamentais universais para toda atividade da vida humana, e o heroísmo produzido a partir desse medo, é o principal problema humano. Usa como ponto de partida a problemática do heroísmo na sociedade contemporânea e mostra a negação da finitude na cultura moderna. Assim, na busca pela transcendência, a humanidade cria símbolos que a distancia, cada vez mais, da percepção da sua realidade enquanto espécie. O mal aparece devido ao surgimento da violência e da aniquilação humanas, que nascem dessa dinâmica de negação da mortalidade

Les dystrophies musculaires de Duchenne (DMD) et de Becker (BMD) sont dues à des mutations dans le gène DMD codant la Dystrophine. De nombreux aspects des mécanismes pathophysiologiques de ces maladies ne sont pas encore expliqués. Nous nous sommes intéressés à l'étude d'ARN non-codants pouvant participer à ces processus. Une première étude a été centrée sur l’identification de micro-ARNs (miARNs) impliqués dans la régulation de l’oxyde nitrique synthase neuronale (nNOS) une protéine partenaire de la Dystrophine et associée à des caractéristiques de ces pathologies telles que la fatigabilité musculaire. 617 miARNs ont été criblés par Taqman Low Density Array dans des muscles de sujets sains et de patients BMDdel45-55. 4 miARNs candidats ont été sélectionnés de cette étude pour leur surexpression chez les patients BMDdel45-55 et leur capacité théorique à cibler nNOS. Des expériences de modulation de l’expression de ces miARNs dans des myoblastes humains sains ou dystrophiques nous ont permis d’identifier que le miR-708-5p et le miR-34-5p pouvaient cibler nNOS et moduler son expression.Un deuxième axe a été mené sur l’étude des longs ARNs non-codants (lncARNs). Les introns 44 et 55, qui bornent les exons 45 à 55 délétés chez les patients BMDdel45-55, sont de grandes régions contenant des lncARNs décrits comme régulant la Dystrophine. Les points de cassure introniques des mutations de ces patients n’étant pas décrites, nous avons supposé l’existence de profils de lncARNs différents. L’analyse de l’ADN de ces patients montre en effet des profils de lncARNs différents, révélant ainsi l’importance d’une étude plus précise des zones de délétion des patients BMDdel45-55. / Duchenne (DMD) and Becker (BMD) muscular dystrophies are due to mutations in DMD gene, encoding Dystrophin. Many aspects of pathophysiological mechanisms of these diseases are not yet well understood. We were interested in the study of non-coding RNAs that could be involved in these pathological processes. A first study focused on micro-RNAs (miRNAs) that could modulate expression of the neuronal nitric oxide synthase (nNOS), a partner of Dystrophin which is linked to pathological features as muscular fatigability. 617 miRNAs were screened by Taqman Low Density Array in muscle biopsies of healthy subjects or BMDdel45-55 patients. 4 candidate miRNAs were selected from this study since they were overexpressed in BMDdel45-55 patients and for their theoretical ability to target nNOS. Experiments modulating the expression of these miRNAs in healthy or dystrophic human myoblasts enabled us to identify that miR-708-5p and miR-34-5p could target nNOS and modulate its expression.A second axis was conducted on long non-coding RNA (lncRNA). Introns 44 and 55, which bound exons 45-55 deleted in BMDdel45-55 patients, are large regions containing lncRNAs described as regulating Dystrophin. Since intronic breakpoints of DMD mutations of these pateints were not described, we have assumed the existence of different profiles of lncRNAs. DNA analysis of these patients actually showed different lncRNAs profiles, thus revealing the significance of a more precise analysis of deletion areas in DMD gene of BMDdel45-55 patients.

Essa dissertação aborda a visualização geométrica e a representação de objetos tridimensionais em diagramas bidimensionais. O objetivo da pesquisa é a criação de uma seqüência didática que atenda esses propósitos. Para desenvolver essa seqüência, foram realizadas diversas atividades piloto com sujeitos do ensino fundamental, médio e superior. A análise da produção dos alunos determinou a seleção e adaptação de atividades para compor a seqüência didática, testada em alunos do terceiro ano do ensino médio, apresentada com a respectiva análise dos resultados. Uma atividade teve destaque nesse trabalho, e por ser de criação própria, foi denominada Caixa de Becker, que consiste na interação com sólidos através do tato. Para análise dos dados, foram utilizadas as teorias de van Hiele, Gutiérrez e Piaget. Fez-se uma breve retomada na história do ensino de matemática, especificamente na área de geometria, para entender a forma em que esse conteúdo é abordado nos livros didáticos. / This dissertation focuses on visualization and geometric representation of three dimensional objects in two-dimensional diagrams. The aim of this research is to establish a teaching sequence to create such diagrams. To achieve this objective several pilot activities were executed with primary, secondary and tertiary education students. The selection and adjustment of activities to compose the teaching sequence were determined by the analysis of the results from a test applied to students in the last year of the high school. The "Becker Box" which was a highlighted activity during the research and is my own invention, provides a way to interact with solid geometric forms by touch. The theories from Van Hiele, Gutiérrez and Piaget were used to make the data analysis. A summary of the mathematics education history were made to understand how this subject is presented and discussed in teaching books. / Esa disertación aborda la visualización geométrica y la representación de los objetos tridimensionales en diagramas bidimensionales. El objetivo de la pesquisa es la creación de una secuencia didáctica que atienda eses propósitos . Para denvolver esa secuencia, fueron realizadas diversas actividades piloto con sujetos de la enseñanza básica, media y superior. El análisis de la producción de los alumnos determinó la selección y la adaptación de las actividades para componer la secuencia didáctica, testada en alumnos del tercer año de la enseñanza media, con el respectivo análisis de los resultados. Una actividade tuvo destaque en ese trabajo, y por ser de creación propria, fue llamada Caja de Becker, que consiste en la interacción con sólidos por medio del tacto. Para análisis de los datos, fueron utilizadas las teorías de van Hiele, Gutiérrez y Piaget. Se hizo una breve retomada en la historia de la enseñanza de la matemática, especificamente en el área de geometría, para entender la forma en que ese contenido es abordado en los libros didácticos.

Essa dissertação aborda a visualização geométrica e a representação de objetos tridimensionais em diagramas bidimensionais. O objetivo da pesquisa é a criação de uma seqüência didática que atenda esses propósitos. Para desenvolver essa seqüência, foram realizadas diversas atividades piloto com sujeitos do ensino fundamental, médio e superior. A análise da produção dos alunos determinou a seleção e adaptação de atividades para compor a seqüência didática, testada em alunos do terceiro ano do ensino médio, apresentada com a respectiva análise dos resultados. Uma atividade teve destaque nesse trabalho, e por ser de criação própria, foi denominada Caixa de Becker, que consiste na interação com sólidos através do tato. Para análise dos dados, foram utilizadas as teorias de van Hiele, Gutiérrez e Piaget. Fez-se uma breve retomada na história do ensino de matemática, especificamente na área de geometria, para entender a forma em que esse conteúdo é abordado nos livros didáticos. / This dissertation focuses on visualization and geometric representation of three dimensional objects in two-dimensional diagrams. The aim of this research is to establish a teaching sequence to create such diagrams. To achieve this objective several pilot activities were executed with primary, secondary and tertiary education students. The selection and adjustment of activities to compose the teaching sequence were determined by the analysis of the results from a test applied to students in the last year of the high school. The "Becker Box" which was a highlighted activity during the research and is my own invention, provides a way to interact with solid geometric forms by touch. The theories from Van Hiele, Gutiérrez and Piaget were used to make the data analysis. A summary of the mathematics education history were made to understand how this subject is presented and discussed in teaching books. / Esa disertación aborda la visualización geométrica y la representación de los objetos tridimensionales en diagramas bidimensionales. El objetivo de la pesquisa es la creación de una secuencia didáctica que atienda eses propósitos . Para denvolver esa secuencia, fueron realizadas diversas actividades piloto con sujetos de la enseñanza básica, media y superior. El análisis de la producción de los alumnos determinó la selección y la adaptación de las actividades para componer la secuencia didáctica, testada en alumnos del tercer año de la enseñanza media, con el respectivo análisis de los resultados. Una actividade tuvo destaque en ese trabajo, y por ser de creación propria, fue llamada Caja de Becker, que consiste en la interacción con sólidos por medio del tacto. Para análisis de los datos, fueron utilizadas las teorías de van Hiele, Gutiérrez y Piaget. Se hizo una breve retomada en la historia de la enseñanza de la matemática, especificamente en el área de geometría, para entender la forma en que ese contenido es abordado en los libros didácticos.

Essa dissertação aborda a visualização geométrica e a representação de objetos tridimensionais em diagramas bidimensionais. O objetivo da pesquisa é a criação de uma seqüência didática que atenda esses propósitos. Para desenvolver essa seqüência, foram realizadas diversas atividades piloto com sujeitos do ensino fundamental, médio e superior. A análise da produção dos alunos determinou a seleção e adaptação de atividades para compor a seqüência didática, testada em alunos do terceiro ano do ensino médio, apresentada com a respectiva análise dos resultados. Uma atividade teve destaque nesse trabalho, e por ser de criação própria, foi denominada Caixa de Becker, que consiste na interação com sólidos através do tato. Para análise dos dados, foram utilizadas as teorias de van Hiele, Gutiérrez e Piaget. Fez-se uma breve retomada na história do ensino de matemática, especificamente na área de geometria, para entender a forma em que esse conteúdo é abordado nos livros didáticos. / This dissertation focuses on visualization and geometric representation of three dimensional objects in two-dimensional diagrams. The aim of this research is to establish a teaching sequence to create such diagrams. To achieve this objective several pilot activities were executed with primary, secondary and tertiary education students. The selection and adjustment of activities to compose the teaching sequence were determined by the analysis of the results from a test applied to students in the last year of the high school. The "Becker Box" which was a highlighted activity during the research and is my own invention, provides a way to interact with solid geometric forms by touch. The theories from Van Hiele, Gutiérrez and Piaget were used to make the data analysis. A summary of the mathematics education history were made to understand how this subject is presented and discussed in teaching books. / Esa disertación aborda la visualización geométrica y la representación de los objetos tridimensionales en diagramas bidimensionales. El objetivo de la pesquisa es la creación de una secuencia didáctica que atienda eses propósitos . Para denvolver esa secuencia, fueron realizadas diversas actividades piloto con sujetos de la enseñanza básica, media y superior. El análisis de la producción de los alumnos determinó la selección y la adaptación de las actividades para componer la secuencia didáctica, testada en alumnos del tercer año de la enseñanza media, con el respectivo análisis de los resultados. Una actividade tuvo destaque en ese trabajo, y por ser de creación propria, fue llamada Caja de Becker, que consiste en la interacción con sólidos por medio del tacto. Para análisis de los datos, fueron utilizadas las teorías de van Hiele, Gutiérrez y Piaget. Se hizo una breve retomada en la historia de la enseñanza de la matemática, especificamente en el área de geometría, para entender la forma en que ese contenido es abordado en los libros didácticos.

A história da Alemanha foi profundamente marcada por fatos como a queda do Muro de Berlim (1989) e a Reunificação do país (1990). Desde então, as representações artísticas não poderiam deixar de retratar esses acontecimentos e suas consequências. Entre elas, a literatura e o cinema alemães têm se ocupado em vários momentos de tais fatos históricos e das mudanças deles decorrentes. De todas as vertentes literárias e cinematográficas que se destacaram nestas últimas duas décadas, a memorialística, ou seja, a preocupação em resgatar e preservar a memória nacional e pessoal as lembranças coletivas e individuais, e também familiares tem se mostrado presente e significativa em suas produções. Relembrar o passado pode ser uma forma não apenas de analisá-lo e compreendê-lo melhor como também de manter vivas certas figuras (entes queridos) através das lembranças. A narrativa assume, portanto, um importante papel ao combater a morte e tudo o que ela representa: superando a perda, procurando evitar o esquecimento e ensinando a aceitar as transformações, a fim de realizar o trabalho do luto. As obras analisadas nesta tese se encaixam de algum modo na categoria acima e oferecem elementos históricos e narrativos que estabelecem um diálogo entre elas, tornando possível um estudo comparativo. Embora se trate de duas obras independentes: um livro de Jakob Hein Vielleicht ist es sogar schön (2004) e de um filme de Wolfgang Becker Good bye, Lenin! (2003) os quais não originaram um ao outro, é possível encontrar pontes (elementos comuns) que as aproximam. Deste modo, o objetivo desta tese é analisar a estrutura narrativa das obras, verificando o papel do narrador, as questões históricas e o tema da morte no livro e no filme. Para tanto, foram usados como fundamento teórico essencialmente os textos de Todorov, Genette, Bordwell, Bandeira, Freud. / The history of Germany was deeply marked by facts like the fall of the Berlin Wall (1989) and the Reunification of the country (1990). Since then, the depicting of these events and their consequences has not been left out by artistic representations. Among those, German literature and cinema, at various moments, have been concerned with such historical facts and the changes originated with them. Of all the literary and cinematographic trends which have stood out in the last two decades, the memorialistic one, i.e. the concern with retrieving and preserving both national and personal memory the collective and individual recollections, and family ones as well has been present and significant in its productions. Remembering the past may be a way to analyze and better understand it as well as keeping certain figures (beloved ones) alive through memories. Therefore, narrative takes a very important part in fighting death and everything it represents: overcoming loss, trying to avoid oblivion, and teaching how to accept changes, in order to fulfill the elaboration of mourning. The works analyzed in this thesis somehow fit the category above and provide historical and narrative elements which establish a dialogue between them, making a comparative study possible. Although these are two independent works: a book by Jakob Hein Vielleicht ist es sogar schön (2004) and a film by Wolfgang Becker Good bye, Lenin! (2003) which have not originated each other, it is possible to find bridges (common elements) which bring them close together. Thus, the objective of this thesis is to analyze the narrative structure of the works, studying the role of the narrator, the historical questions, and the theme of death in both the book and the film. To achieve that, texts by Todorov, Genette, Bordwell, Bandeira, Freud were used as theoretical basis.

L'objectif de ce travail est de développer la partie clinique de la banque de données du gène DMD, afin d'étudier l'histoire naturelle des dystrophinopathies et les corrélations génotype–phénotype, et de faciliter la sélection des patients pour les futurs essais thérapeutiques. La méthodologie créée pour le gène DMD peut être généralisée et utilisée pour d'autres banques de données dédiées à des maladies génétiques. La collecte de 70 000 données cliniques chez 600 patients avec un suivi longitudinal moyen de 12 ans permet de décrire l'histoire naturelle des dystrophies musculaires de Duchenne et de Becker et des formes symptomatiques chez les femmes. Nous avons pu préciser l'hétérogénéité phénotypique sur le plan moteur, orthopédique et respiratoire (forme sévère et forme intermédiaire de la dystrophie musculaire de Duchenne), sur le plan cardiaque (absence de corrélation entre les atteintes motrice et cardiaque, variabilité de l'atteinte cardiaque), et sur le plan cérébral (atteinte intellectuelle chez les patients avec dystrophie musculaire de Becker, troubles psychologiques des dystrophinopathies). L'utilisation de cet outil par les cliniciens et les généticiens devrait faciliter le travail de recherche clinique et la réalisation des futurs essais cliniques. Ceci nécessite maintenant de développer l'accessibilité de la banque de données et d'envisager sa pérennisation. / The objective of this work is to develop the clinical part of the French dystrophinopathy data-base, in order to study the natural history and the genotype-phenotype correlations, and to facilitate the selection of the patients for the future therapeutic trials. The methodology developed for the DMD gene can be generalized and used for the other databases dedicated to genetic diseases. The collection of 70 000 clinical data for 600 patients with an average lon-gitudinal follow-up of 12 years allows to clarify the natural history of the muscular dystrophies of Duchenne and Becker and in symptomatic females. We were able to specify the pheno-typic heterogeneity of the motor, orthopaedic and respiratory involvements (severe form and intermediary form of the Duchenne muscular dystrophy), of the cardiac disorder (absence of correlation between motor and cardiac involvements, variability of the cardiomyopathy), and of the brain function (mental deficiency in the patients with Becker muscular dystrophy, psychological disorders in dystrophinopathies). The use of this tool by the clinicians and the ge-neticists should facilitate their clinical research work and the realization of the future clinical trials. This requires now to develop the accessibility of the database and to ensure its continued existence.

In this essay the Scandinavianistic narrative is examined in Oscar Patrick Sturzen-Becker's depictions of the Schleswig-Holstein war of 1848 in his newspaper Allmänna Öresunds-Posten. Through both poetry and prosaic agitation, he sought during the first months of the war to gather an opinion for a Swedish intervention for the cause of Denmark against the Prussian-supported uprising in the southern duchies and at the same time work for a consensus on a larger pan-national demarcation with Germany and Europe. He had a dream of a united Scandinavia that was shared by the student movement of the 1840s and contemporary liberal political groups, a dream of a resurrected great power from the past and at the same time a modernized liberal democracy.  What the essay intends to analyze is what the Scandinavianistic narrative looked like and in what way it changed with the development of the war. The old hereditary enemy Russia came to be increasingly overshadowed by the new German threat and even though Swedish troops did enter Danish soil for the sake of their Scandinavian brothers, they never joined the battlefield in Schleswig. The military intervention soon turned into a diplomatic pursuit of a temporart ceasefire and peace, so how did Sturzen-Becker's narrative create meaning in these twists and turns and was this period, after all, to be regarded as a part victory for his Scandinavian dreams? / I denna uppsats utforskas det skandinavistiska narrativet i Oscar Patrick Sturzen-Beckers skildringar av det Schleswig-Holsteinska kriget 1848, i dennes tidning Allmänna Öresunds-Posten. Genom både poesi och prosaisk agitation sökte han under krigets första månader samla en opinion för ett svenskt ingripande för Danmarks sak mot det preussiskt understödda upproret i de södra hertigdömena och samtidigt verka för en samsyn om en större pan-nationell gränsdragning mot Tyskland och Europa. Han hade en dröm om ett enat Skandinavien som delades av 1840-talets studentrörelse och av samtida liberala politiska grupper, en dröm om en återuppstånden stormakt från det förflutna och samtidigt en moderniserad liberal demokrati. Det uppsatsen avser att analysera är hur det skandinavistiska narrativet såg ut och på vilket sätt det förändrades med krigets utveckling. Den gmla arvfienden Ryssland kom att hamna alltmer i skuggan av det nya tyska hotet och även om svenska trupper faktiskt kom att beträda dansk mark för sina skandinaviska bröders skull, kom de aldrig att ansluta på slagfältet i Schleswig. Det militära ingripandet övergick snart till en diplomatisk strävan efter en tillfällig vapenvila och fred, så hur skapade Sturzen-Beckers narrativ mening i dessa vändningar och var denna period trots allt att betrakta som en delseger för hans skandinavistiska drömmar?

Background: Duchenne and Becker muscular dystrophies, collectively referred to as dystrophinopathies, are recessive X-linked disorders characterized by progressive muscle weakness and ultimately cardiac and respiratory failure. Immediate family members are often primary caregivers of individuals with a dystrophinopathy. Methods: We explored the impact of this role by inviting primary caregivers (n = 209) of males diagnosed with childhood-onset dystrophinopathy who were identified by the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) to complete a mailed questionnaire measuring perceived social support and stress, spirituality, and family quality of life (FQoL). Bivariate and multivariate analyses examined associations between study variables using the Double ABCX model as an analytic framework. Results: Higher stressor pile-up was associated with lower perceived social support (r = -0.29, p <.001), availability of supportive family (r = -0.30, p <.001) or non-family (r = -0.19, p <.01) relationships, and higher perceived stress (r = 0.33, p <.001); but not with spirituality (r = -0.14, p > 0.05). FQoL was positively associated with all support measures (correlations ranged from: 0.25 to 0.58, p-values 0.01-0.001) and negatively associated with perceived stress and control (r = -0.49, p <.001). The association between stressor pile-up and FQoL was completely mediated through global perceived social support, supportive family relationships, and perceived stress and control; supportive non-family relationships did not remain statistically significant after controlling for other mediators. Conclusions: Findings suggest caregiver adaptation to a dystrophinopathy diagnosis can be optimized by increased perceived control, supporting family resources, and creation of a healthy family identity. Our findings will help identify areas for family intervention and guide clinicians in identifying resources that minimize stress and maximize family adaptation.