As taxas de morte materna vêm diminuindo em diversos países como resultado de esforços para atingir o Quinto Objetivo de Desenvolvimento do Milênio, o qual estipulou redução da morte materna no Brasil de 56/100.000 nascidos vivos para 16/100.000 nascidos vivos. Os estudos sobre a Morbidade Materna Grave vêm contribuir para compreensão das causas da morte materna, uma vez que se referem às mulheres que sobreviveram a graves complicações na gestação, parto ou puerpério. Neste contexto, o presente trabalho buscou conhecer e analisar as vivências, por parte de mulheres, em relação a um episódio de Morbidade Materna Grave. Utilizando o método qualitativo, foi possível compreender a vivência subjetiva das mulheres sobre a Morbidade Materna Grave. As mulheres que participaram do estudo foram identificadas durante internação decorrente do estado mórbido, sendo contatadas no hospital. Um segundo encontro foi agendado para realização de entrevista semiestruturada. Foram entrevistadas 16 mulheres que passaram por um episódio de Morbidade Materna Grave. As entrevistas foram transcritas e analisadas, segundo a análise de conteúdo. A análise das entrevistas permitiu identificar quatro temáticas: \"gravidez não é doença... mas eu adoeci\"; \"não estou doente, isso deve ser da gravidez\"; tratamento: um mal necessário; superação x alerta constante. As participantes apresentaram uma representação de saúde como ausência de doença e de saúde como algo incapacitante. Essa representação vai ao encontro da dificuldade em identificar os sintomas da morbidade em estágios iniciais, buscando auxílio apenas quando os sintomas estavam em estado avançado e interferindo na rotina das mulheres. A gestação foi representada como uma doença, uma vez que a experiência da Morbidade Materna Grave se sobressaiu à experiência da gestação. A Morbidade Materna Grave foi entendida como uma experiência negativa relacionada às dificuldades do tratamento e hospitalização. Também foi possível identificar nas falas das mulheres a presença de medo, preocupação com o feto, frustração da gravidez idealizada, trauma, mas também aprendizado e um propósito de Deus como aspectos positivos da experiência. Como consequência do evento mórbido, as mulheres relataram maior preocupação com a saúde e mudança em alguns comportamentos que possam evitar uma recaída. Diante esses achados, percebemos a importância de um acompanhamento efetivo no pré-natal e puerpério que possibilite uma maior reflexão sobre saúde e autocuidado, além de oferecer um suporte mais efetivo para as dificuldades e sequelas da Morbidade Materna Grave / Maternal death rates are decreasing in many countries as a result of efforts to achieve the fifth Millennium Development Goal, which stipulates reduction of maternal death in Brazil from 56/100.000 live births to 16/100.000 live births. Studies on the Severe Maternal Morbidity helps to understand the causes of maternal death because it refers to women who have survived serious complications during pregnancy, childbirth or puerperium. In this context, the present study searched to understand and analyze the experiences of women about an episode of Severe Maternal Morbidity. By using the qualitative method, it was possible to understand the subjective experience of women about Severe Maternal Morbidity. Participants were identified and contacted during hospitalization due to a morbid state. A second meeting was scheduled to undergo semistructured interview. We interviewed 16 women who had an episode of Severe Maternal Morbidity. The interviews were transcribed and analyzed according to content analysis. The data analysis allowed us to identify four themes: \"pregnancy is not a disease... but I got sick\"; \"I\'m not sick, it must be part of the pregnancy\"; treatment: a necessary evil; overcoming x constant alert. Participants represent health as absence of disease and health as something disabling. This representation meets the difficulty in identifying the symptoms of morbidity in early stages, seeking help only when symptoms were at an advanced stage and interfering in women\'s routine. Pregnancy was represented as a disease once the experience of Severe Maternal Morbidity overcame the experience of pregnancy. The Severe Maternal Morbidity was perceived as a negative experience related to the difficulties of treatment and hospitalization. It was also possible to identify in the women\'s speech the presence of fear, concern for the fetus, and frustration of idealized pregnancy, trauma, but also learning and a purpose of God as positive aspects of the experience. Because of the morbid event, women reported greater concern about health and change in some behaviors that may prevent relapse. Given these findings, we realize the importance of an effective monitoring prenatal and postpartum that provides a larger reflection on health and self-care besides offering more effective support for the difficulties and consequences of Severe Maternal Morbidity

Introdução – A mortalidade materna apresenta grande diferença entre os países desenvolvidos e em desenvolvimento e espelha a qualidade da assistência prestada à saúde da mulher. Para evidenciar melhor essa assistência novos métodos de estudo vêm sendo utilizados, dentre eles a investigação das morbidades materna graves – near misses. Objetivo - Analisar se a cor é fator de risco determinante de casos de near miss, das mulheres residentes em três municípios da Região Metropolitana de Curitiba. Método - Estudo de caso-controle prospectivo de base populacional. Resultados - Foram identificados 68 casos de near miss, dentre eles um óbito materno direto, um indireto tardio e um direto tardio, sendo relação de 1 óbito para cada 23 casos de near miss ou 4,41%. A razão de mortalidade materna ficou em 36,05/100 mil nascidos vivos, atingindo 108,15/100 mil nascidos vivos considerando os dois óbitos tardios. Os casos representam taxa de 2,45% das gestantes ou 24,50/1000 partos. Tanto na análise univariada como na multivariada a cor não apresentou significância estatística sendo o p= 0,497 e 0,8964 respectivamente. Houve significância estatística na interação entre cor e paridade p= 0,0095, OR 3,67 (IC 95% 1,37 – 9,80). Conclusões – Dentre outros achados a relação de 1 óbito materno para 23 casos de near miss e o salto da razão de mortalidade materna de 36,05 para 108,15/100 mil nascidos vivos justificam o estudo da morbidade materna grave, possibilitando conhecer a real situação da assistência a saúde da mulher. A variável cor não foi identificada como sendo fator de risco para near miss. Evidenciou-se a necessidade de aprofundamento da análise das variáveis identificadas como fatores de risco para near miss: idade e outras causas de internação para mulheres brancas, número de gestações e doenças associadas para as mulheres negras, assim como a instituição de outros parâmetros de análise como as transferências e reinternações. / Introduction - Maternal mortality presents great difference between the developed and developing countries and reflects the quality of the woman health care delivered. To evidence this assistance better new study methods come being used, amongst them, the investigation of the severe maternal morbidity - near misses. Objective – Evaluate if the color is a determinative factor to cases of near miss to women who live in three cities of Metropolitan Region Curitiba. Method – Prospective case-control study of population-based. Results – 68 cases of near miss had been identified, amongst them one direct maternal death, one delayed indirect and one delayed direct, being relation of 1 death for each 23 cases of near miss or 4.41%. The maternal mortality ratio was in 36,05/100,000 live births, reaching 108,15/100,000 live births considering the two delayed deaths. The cases represent 2,45% of the pregnants or 24,50/1000 live births. As much in the univariate analysis as in multivariate the color did not present statistic significance, being p= 0,497 and 0,8964, respectively. There was statistic significance in the interaction between color and parity p= 0,0095, OR 3,67 (IC 95% 1,37 - 9,80). Conclusions – Amongst other findings, the relation of 1 maternal death for 23 cases of near miss and the jump of the maternal mortality ratio from 36,05 to 108,15/100,000 live births justify the maternal morbidity study making possible to know the real situation of the assistance the health of the woman. The variable color was not identified as being factor of risk to near miss. It was proven necessity of deepening of the analysis of the identified variable as factors of risk to near miss: age and other causes of internment for white women, number of gestations and diseases associates for the black women, as well as the institution of other parameters of analysis as the transferences and re-internment

Com o objetivo de analisar a evolução dos níveis de glicose e dos hormônios insulina, glucagon e cortisol de cadelas com piometra e sepse grave durante o tratamento intensivo, foram estudadas 13 cadelas que apresentaram duas alterações na resposta inflamatória sistêmica e no mínimo uma disfunção orgânica. Antes do procedimento cirúrgico foram colhidas amostras para realização de exames laboratoriais e avaliação dos níveis dos hormônios insulina, glucagon e cortisol. Durante o período de internação, os animais foram avaliados diariamente por meio da análise de perfis bioquímicos renal e hepático, hemograma, sódio, potássio, insulina, glucagon e cortisol. O nível de glicose foi avaliado antes do procedimento cirúrgico, a cada 3 h nas primeiras 6 h e a cada 6 h até a alta ou óbito dos pacientes. Após o procedimento cirúrgico, os animais obtiveram a inserção do aparelho de CGMS no subcutâneo, para avaliação da glicose subcutânea. Um grupo controle com nove animais foram submetidos às mesmas dosagens de glicose do grupo sepse. Para a análise estatística da comparação dos valores obtidos para o grupo controle foi utilizado o teste não paramétrico Wilcoxon. Para avaliação da glicose, glucagon, cortisol, insulina, sódio e potássio para o grupo sepse, utilizou-se abordagem de modelos mistos com medidas repetidas. Os animais do grupo sepse apresentaram 7,37±1,66 anos de idade e 23,88±8,5 kg de peso corpóreo. No primeiro dia de internação, 23 % dos animais apresentaram hiperglicemia e estes animais permaneceram maior período de internação quando comparado com os demais animais. Nenhum animal apresentou hipoglicemia; apenas a técnica utilizada com Medsense Optium® apresentou valores superiores quando comparado com os valores de referência. Os animais apresentaram valores elevados de glucagon no primeiro dia quando comparado com o último dia de internação; o mesmo comportamento foi apresentado pelo cortisol e insulina. Como conclusão do estudo os animais com sepse grave apresentaram hiperglicemia e elevação dos hormônios glucagon, cortisol e insulina que tenderam a normalização na alta. / Aiming the analysis of glucose, insulin, glucagon and cortisol hormones levels in female dogs with pyometra and severe sepsis during intensive treatment. It was studied 13 female dogs with pyometra diagnosis and severe sepsis, which, the animals presented two alterations on the systemic inflammation response and at least one organic dysfunction. Before surgical procedure, samples were collected to laboratory exams realization and evaluation of hormones levels (insulin, glucagon and cortisol). During the interning time, the animals were evaluated daily through the renal and hepatic biochemical profile analysis, hemogram, sodium, potassium, insulin, glucagon and cortisol. The level of glucose was evaluated before the surgical procedure, every 3 hours in the first 6 hours and every 6 hours until patient discharge or patient death. After the surgical procedure, the animals received the CGMS introduction in subcutaneous, for glucose subcutaneous evaluation. A control group of nine animals were submitted to the same dosages of glucose from sepsis group. For statistical analysis of values comparison obtained to the control group was utilized the non parametric testing of Wilcoxon. For glucose evaluation, glucagon, cortisol, insulin, sodium and potassium to the sepsis group, was utilized the mixed model approach with repeated measurements. The animals of sepsis group presented 7,37±1,66 years and 23,88±8,5 Kg of body weight. At the first interning day, 23% of animals presented hyperglycemia and these animals remained with a longer interning period when compared with other animals. None of animals presented hypoglycemia; there was a difference only related to the utilized technique (Medsense Optium® presented higher values when compared to the reference values). The animals presented high values if glucagon at the first day when compared to the last interning day; the same was noticed with cortisol and insulin. As conclusion to this study, the animals with severe sepsis presented hyperglycemia and increase of hormones levels of glucagon, cortisol and insulin, which tendered to normalization on their discharge.

Submitted by Filipe dos Santos (fsantos@pucsp.br) on 2017-10-04T11:04:25Z No. of bitstreams: 1 Érika Perina Motoyama.pdf: 1039414 bytes, checksum: 9f2a2a4ea1e2d5ec140f2a3655f02c11 (MD5) / Made available in DSpace on 2017-10-04T11:04:25Z (GMT). No. of bitstreams: 1 Érika Perina Motoyama.pdf: 1039414 bytes, checksum: 9f2a2a4ea1e2d5ec140f2a3655f02c11 (MD5) Previous issue date: 2017-09-19 / Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - CAPES / Taking care of the dead destination is part of the human nature, being the grave a memory monument adopted by many families across several generations. Grave violation has been considered a crime in Brazil since 1851, thus, besides the material loss, there is also a symbolic offense. This phenomenon has been poorly studied by both psychology and other areas of science. The aim of this study was to learn about the construction of meaning attributed by the relatives facing grave violation. This is a multiple case study involving five residents of the metropolitan area in São Paulo, who went through semi-structured interviews and construction of genogram in order to map the members of the family buried in the graves. The data collected was assessed individually using thematic analysis technique and later discussed with integrated approach. In each case studied, particular issues were addressed, such as: grave as a material possession; violence in the cemetery space; emotional impact caused by grave violation; cemetery ambiguous role; loss of funeral customs; death taboo; grave as a place of affection and memories, banalisation of violation as a crime; appreciation of family tradition; grave as a place of memory and respect; cemetery as an irrelevant place; importance of the relationship during the life. This way, the links established, added to the cultural, religious and family aspects, have influence in the meaning conveyed to the grave and, consequently, in the relationship established with it. It was possible to identify that the time gap between the grave violation and the participation in the interview was not significant / Cuidar do destino dos mortos é algo próprio do ser humano, sendo o túmulo um monumento de memória adotado por muitas famílias, por diversas gerações. A violação de túmulo é considerada crime no Brasil desde 1851, sendo que, para além do prejuízo material, há também um ataque ao simbólico. Trata-se de um fenômeno pouco estudado pela psicologia e por outras áreas das ciências. O objetivo deste trabalho foi conhecer a construção de significado do familiar diante da violação de túmulo. Trata-se de um estudo de caso múltiplo com cinco moradores da região metropolitana de São Paulo, tendo sido realizadas entrevistas semiestruturadas e construção de genograma a fim de mapear os familiares sepultados no túmulo. Os dados coletados foram avaliados individualmente a partir da técnica de análise temática e posteriormente discutidos de maneira integrada. Em cada estudo de caso foram encontrados temas particulares, como: túmulo como bem material; violência no espaço cemiterial; impacto emocional da violação do túmulo; função ambígua do cemitério; perda dos costumes fúnebres; tabu da morte; túmulo como local de afetos e memórias; banalização da violação como crime; valorização da tradição familiar; túmulo como local de memória e respeito; cemitério como local dispensável; importância do vínculo em vida. Assim, os vínculos constituídos, somados aos fatores culturais, religiosos e familiares influenciam o significado atribuído ao túmulo e consequente na relação estabelecida com ele. Foi possível identificar que o tempo decorrido entre a violação do túmulo e a participação na entrevista não se mostrou significativo

This essay addresses and analyses the grave field from Broa in Halla, RAÄ 48:1 and SHM 11106 with objects in SHM 10796, dated to 800-900 a.d. The essay is done as part of examination in archaeology C with osteological orientation spring 2018 at Uppsala university, campus Gotland. Gustav Malmborg was supervisor for this essay. The objective of the essay is to give an osteological analysis since it hasn’t been done since the excavation 1899, but also to bring forth what information that can be pursued osteologically. This due to that grave A is the only one to be researched upon and not in full context, only partly focusing on the equestrian equipment, the amber lyre bridge and the sword. The questions of issue are; what can be told about the individuals from the grave field? Is there any grave that can be compared against grave A? What can be said about the contemporary society and the premises? Future research can use this essay as a stepping stone for other comparisons and use the osteological data to relate more information about lyre individuals.   This quantitative essay presents the analysis each grave individually using morphological and metric methods, such as age, sex, paleopathological changes, MIND and estimated stature. After analysis is result presented as a table for easy overview (Table 1). Discussion and interpretation follows, one grave at a time over to the grave field and thereafter the premises. End discussion handles the questions of issue to summarize the discussion and interpretation. Conclusion summarizes the results from all of the above mentioned, such as one grave contains more than one individual which has been unknown before. Possible kinship is found in a grave and the possibility of the contemporary premises to be part of a larger house/farm.

Les femmes représentent un tiers des personnes vivant avec le VIH en France. Les trois parties de cette thèse visent à explorer les principaux aspects cliniques de la maladie (causes de décès, morbidité grave) ou de la vie des femmes (ménopause) afin d’identifier des recommandations spécifiques pour la prise en charge des femmes dans un contexte d’accès aux soins similaire à celui des hommes.Les causes de décès des femmes infectées par le VIH ont été décrites grâce à l’enquête nationale ANRS EN19, Mortalité 2005. Les femmes décédaient plus fréquemment que les hommes de causes liées au sida (43% vs. 34% chez les hommes). Elles décédaient moins souvent de causes hépatiques (13 % vs. 16%), de cancers non sida-non hépatiques (14% vs. 17%) et de maladies cardiovasculaires (6% vs. 9%). La morbidité grave des patients infectés par le VIH a été étudiée au sein de la Cohorte ANRS CO3-Aquitaine, entre 2000 et 2008. Le taux d’incidence annuelle d’hospitalisation a diminué de moitié entre 2000 et 2008 (146 à 69 pour 1000 PA). Globalement, ce taux ne différait pas entre les femmes et les hommes. Les causes les plus fréquentes de morbidité grave conduisant à une hospitalisation étaient : les infections bactériennes, les événements sida, psychiatriques, hépatiques, hématologiques, infections virales, événements digestifs, infections parasitaires et les événements cardiovasculaires. Toutes ces causes ont eu une baisse de leur incidence annuelle entre 2000 et 2008 chez les hommes et les femmes, exceptés les événements hématologiques (de 2,5 à 15,1 pour 1000 PA), hépatiques (2,5 à11,5) et cardiovasculaires (6,3 à 14,2) qui ont augmenté chez les femmes. L’âge de survenue de la ménopause étudié grâce à une enquête menée au sein de la Cohorte ANRS CO3-Aquitaine était de 49 ans en médiane et 12% des femmes ont eu une ménopause précoce, survenant avant l’âge de 40 ans. L’origine africaine (RR : 8,2) et l’antécédent de toxicomanie IV (RR : 2,5) étaient liés à la survenue plus précoce de la ménopause. En conclusion, les femmes infectées par le VIH en France décèdent plus souvent de sida, mais présentent une morbidité grave caractérisée par une prédominance de complications non classant sida. Dans un contexte d’accès aux soins similaires à celui des hommes infectés par le VIH, les femmes ont un profil de maladies associées traduisant à la fois leurs co-morbidités (co-infections par les hépatites) ou l’inflammation chronique du VIH (maladies cardio-vasculaires) qui nécessitent d’être détectées précocement et prises spécifiquement en charge. / Women represent one third of HIV-infected patients in France. The objective of this thesis was to study the clinical features (causes of death and severe morbidity) and the age and determinants of menopause of these patients in a context of equal access to care for all HIV-infected patients.Causes of death of HIV-infected women were identified in 2005, in a nation-wide survey (ANRS EN19, Mortalité 2005). Women died more often than men from AIDS-related causes (43% vs. 34%) and less frequently from hepatic (13% vs. 16%), non-AIDS non-hepatic cancers (14% vs. 17%) and cardiovascular diseases (6% vs. 9%). Severe morbidity was studied within the ANRS CO3-Aquitaine Cohort between 2000 and 2008. Annual incidence rates of hospitalization globally decreased for men and women from 146 per 1000 PY in 2000 to 69 in 2008. The most frequent causes of severe morbidity leading to hospitalization were: bacterial infections, AIDS events, psychiatric, hepatic, hematologic events, viral infections, digestive events, parasitical infections and cardiovascular events. All events had decreased between 2000 and 2008 in men and women excepted for hematologic (2.5 to 15.1 per 1000 PY), hepatic (2.5 to 11.5) and cardiovascular (6.3 à 14.2) events that increased overtime in women. Age at onset and associated factors of menopause were determined within the ANRS CO3-Aquitaine Cohort. Median age at menopause was 49 years and 12% reached menopause before 40 years (premature menopause). African origin (HR: 8.2) and history of injecting drug use (HR: 2.5) were associated with earlier menopause.In conclusion, HIV infected women in France, die more often from AIDS events but present with a predominantly non-AIDS severe morbidity. In a context of similar access to care than men, women’s health care should take into account their co-morbidities (hepatitis co-infections) and the cardiovascular complications of a long term HIV infection.

Cette thèse a été conçue pour évaluer les différences de réponses du point de vu anthropométrique, physiologique et des paramètres liés à la santé entre différents programmes d'entraînement sur une population de sujets fortement obèses non morbides. Tous les sujets ont suivi un programme intégré de réduction de la masse corporelle (RMC) d'une durée de trois semaines. Le programme intégré comprenait les éléments suivants : régime hypocalorique, éducation nutritionnelle, conseils psychologiques et entraînement physique. Tous les tests ont été effectués la veille du début du programme intégré et répétés à la fin de celui-ci (soit au bout de 3 semaines et à la fin d'une année de follow up). Les résultats principaux ont été les suivants : 1) le programme intégré de RMC a fonctionné, car les sujets inactifs ont augmenté leur niveau d'activité physique ; sur la population globale on a observé une amélioration des capacités physiologiques à court terme et à long terme qui s'accompagne d'une perte de poids (en moyenne 6 kg); 2) la guideline principale qui ressort de cette étude est qu'il est nécessaire d'introduire l'activité physique comme élément indispensable dans la vie quotidienne en marchand 30 min par jour ; 3) notre étude ne permet pas d'étayer l'avantage d'un entraînement en force pour éviter la perte de masse maigre pendant un régime diététique mais l'entraînement en force a permis l'amélioration de la force maximale des sujets ; 4) notre étude a permis de déterminer que dans une première phase d'entraînement une intensité moyenne d'exercice peut suffire. Efforts supplémentaires doivent être fait pour permettre une modification du style de vie permanente

Dans le contexte de l'ingénierie du transport, ce travail est consacré à l'étude du comportement cyclique à long terme des infrastructures (voie ferrée, chaussées routières, ...). Ces dernières sont sujettes à des chargements de trafic qui provoquent des dégradations importantes (défauts de voies ferrées et orniérage des chaussées) ayant pour conséquence des problèmes d'exploitation, de confort et de sécurité des usagers. Les campagnes de maintenance étant coûteuses, il en résulte la nécessité de disposer d'un outil de prédiction des dégradations des infrastructures permettant l'optimisation de l'intervention des exploitants. Nous proposons dans ce travail une approche de type calcul des structures visant à déterminer la réponse globale de la plate-forme soumise à des chargements répétés (quelques millions de cycles), notamment le tassement résiduel en surface. Nous décrivons en particulier ce phénomène (à double échelle de temps) en se référant à l'effet de l'accumulation des déformations permanentes qui sont à l'origine de l'apparition du tassement résiduel. La détermination de ces déformations permanentes nécessite la formulation d'une loi de comportement cyclique des matériaux constitutifs de l'infrastructure (ballast, grave non traitée) que nous incorporons dans un schéma de calcul. En se basant sur l'approche ainsi développée, nous mettons au point un outil de calcul numérique faisant intervenir un code de calcul en éléments finis, permettant la détermination du tassement résiduel de l'infrastructure de transport après application de quelques milliers de cycles. Nous avons validé cette procédure, qui a été ensuite testée à partir de la simulation d'essais effectués sur un banc, modélisant une portion de voie ferrée à l'échelle réduite. Finalement, nous avons tenté de tenir compte de l'élasticité non linéaire des matériaux constitutifs de l'infrastructure de transport, et nous avons mis en exergue l'importance de cet aspect dans la prédiction du tassement résiduel.

<p>I have statistically worked up a material from 228 graves from the late Iron Age in the area of Mälardalen.</p><p>In my material I have gathered the incidence of combs, knifes, beads, weapons whetstones and torshammarsrings.</p><p>I have found that beads are overrepresented in graves of women and whetstones in graves of men. I only found weapons in graves from male.</p><p>I found no indication from my statistic hypothesis (Z-test) that a grave that contains more than three beads should define the grave of a woman. A grave that contains a lot of beads, more than 20, consider I as a female gender.</p><p>Combs, knifes and torshammarsring are considered as gender neutral.</p>

Cette recherche qualitative de nature exploratoire a comme objectif général d'analyser les pratiques d'engagement de parents d'enfants atteints de maladie à issue fatale auprès d'un organisme qui offre du répit (Le Phare, enfants et familles) ainsi que les retombées de ces pratiques sur ces parents, leur famille, leur entourage, l'organisme en question et les autres familles qui ont un enfant atteint de maladie grave. Nous avons ciblé l'organisme Le Phare, enfants et familles, qui offre deux formes de répit: du répit à domicile ainsi que du répit à la Maison André-Gratton qui est une maison de soins palliatifs pédiatriques. Cette recherche a permis de développer et d'approfondir des connaissances entourant le concept de l'engagement dans ce contexte bien particulier dans lequel il apparaît très surprenant de constater que des parents, déjà largement engagés dans la sphère privée, puissent trouver du temps et de l'énergie pour s'impliquer dans un organisme soutenant des parents placés dans la même situation qu'eux. Elle a aussi été réalisée dans le but d'aider les parents à maintenir leur engagement ainsi que d'offrir des suggestions à l'organisme afin que les parents vivent leur engagement de manière plus satisfaisante. À cet effet, les résultats seront transmis aux parents ainsi qu'à l'organisme. Sur le plan méthodologique, nous avons rencontré trois hommes et cinq femmes qui sont ou ont été engagés auprès du Phare, enfants et familles. Une analyse de contenu a été réalisée à partir de la transcription d'entretiens individuels faits avec les parents et pour ce faire, une grille d'analyse a été créée. Deux temps d'analyse ont été effectués: une première analyse verticale de chacune des entrevues suivie d'une analyse transversale afin de croiser les résultats. Les résultats démontrent que l'engagement des parents est intégré aux exigences de la vie de ces parents qui ont un enfant atteint de maladie grave et est situé au plus près de leurs besoins. Il permet de créer du sens au regard de la maladie et du deuil de leur enfant qui bouleversent tous leurs repères et qui leur semblent insensés. De plus, il contribue à briser l'isolement de ces familles et répond à un besoin de socialisation en favorisant la création de liens sociaux multiples car il s'inscrit dans une logique de don et de dette où s'opèrent des échanges. De plus, la participation des parents est source de pouvoir, de reconnaissance, de construction de l'identité et d'espoir. En conclusion, nous proposons une synthèse des résultats, une présentation des retombées possibles en lien avec cette recherche ainsi que quelques pistes de recherches futures. ______________________________________________________________________________ MOTS-CLÉS DE L’AUTEUR : Engagement, Parent, Enfant, Maladie grave, Répit.