[Truncated abstract] Background: A review of the literature indicated there was a need for more long-term randomised controlled studies on the effects of BRCA counselling/testing on high risk women, including improved strategies for risk communication. Reviews have also shown women are confused about the significance of inconclusive or non informative results with a need for more research in this area. Aims: The general aim of this study was to evaluate the impact of breast cancer genetic counselling on psychological distress levels, perception of risk, genetic knowledge and understanding of BRCA testing/test results in a cohort of 207 women from high risk breast cancer families who were referred for genetic counselling in Perth during the period 1997 to 2001. Short- and long-term impact of BRCA genetic counselling/testing was determined in women with and without cancer in a randomised controlled trial as part of which women were randomised to either receive immediate versus delayed genetic counselling. This included family communication patterns before BRCA testing, anticipated outcomes of testing on oneself and family including intentions for result disclosure. Comprehension of index and predictive BRCA testing with possible results was assessed both in the short- and the long-term and understanding of individual or family BRCA test results was evaluated at long-term. The effect of genetic counselling on breast cancer risk perception in unaffected women was evaluated. This study considered a theoretical framework of educational learning theories to provide a basis for risk communication with possible relevance for future research. ... Only 25% of the original study population (52/207) reported BRCA results and women's understanding of results is concerning. Key findings were: 1. The majority of affected women received an inconclusive result. 2. Out of twelve unaffected women who reported results, seven were inconclusive which are not congruent with predictive testing. This implies that these women did not understand their test result. 3. A minority of untested relatives did not know whether a family mutation had or had not been found in their tested family member or what their actual test result was. This implies either a lack of disclosure or that woman did not understand the rationale for and significance of testing for a family mutation. 4. Three relatives did not understand a positive result was a mutation. Conclusion: The implication of this research for breast cancer counselling and testing services is that women who wait for counselling are no worse off in terms of short- or long-term general psychological distress than women who receive the intervention early. There is a suggestion that unaffected women without the disease found counselling more advantageous than affected women. The meaning of BRCA results as reported by women is concerning particularly women's understanding of negative and inconclusive results and further research is needed in this area. Too much information presented at counselling may affect women's comprehension of risk, BRCA testing and future test results and further research is required to evaluate the effects of information overload.

Background: The relationship between informational support and use of health care services among individuals newly diagnosed with cancer remains little documented despite its importance for optimal care delivery. Aim: To document the role of informational support in light of patterns of health services used by women and men newly diagnosed with cancer. Method: A sequential mixed methods approach (i.e., quantitative-qualitative) was conducted among women and men newly diagnosed with either breast or prostate cancer. First, an existing quantitative database was used to determine whether an intervention relying on multimedia tool as a complement to the provision of usual cancer informational support to patients (N = 250) would modify subsequent health care service use. A follow-up qualitative inquiry with distinct individuals also newly diagnosed (N = 20) was conducted to explore this relationship further. Next, the resulting quantitative and qualitative findings were merged and reanalyzed using a quantitative-hierarchical approach to enhance our understanding of the phenomenon. Findings: Several personal and contextual factors were found to qualify the relationship between cancer informational support and health service use. Although quantitative analyses showed no significant differences in terms of overall reliance on health care services among participants who received more intense cancer informational support as opposed to those who received care as usual, several sex differences were noted in terms of number of visits to health care professionals, time spent with nurses and satisfaction with cancer information received. Qualitative findings revealed that participants reported a variety of experiences pertaining to cancer information received (e.g., positive, unsupportive or mixed) as well as several processes at play (e.g., cancer information seen as enabling, confirming, or conflicting). These differences in informational support, in turn, influenced their subsequent service utilization (e.g., more phone calls made to health professionals, reduction in face-to-face visits, reluctance to use cancer-related services). The mixed data analysis clarified further the findings allowing a broader perspective to emerge. Conclusion: Findings underscore that the relationship between cancer information and use of services is not as straightforward as initially anticipated. These findings provide initial insights that may inform future research on the topic and assist health care providers in optimizing their cancer informational interventions to guide patients in their reliance on health care services.

A child diagnosed with a life-threatening illness such as cancer, and is hospitalized for extensive periods of time, is faced with innumerable stressful and traumatic circumstances. This emotionally challenging life situation can bring on much emotional distress such as anxiety. Thus, it has become imperative that the oncology child is assisted and supported, in his individual struggle to cope with the harshness of his strained reality. In this study the hospitalized oncology child was provided with a means of support and intervention through the use of Gestalt play therapy. Gestalt play therapy was conducted to assist the child to express and work through feelings of anxiety and related emotional distress associated with his present life experience. Gestalt play therapy was presented with six case studies. The researcher explored and described the experiences of each case study from which, the researcher drew conclusions and made recommendations. / Social Work / M.Diac. (Play Therapy)

O propósito desta dissertação é examinar como mulheres percebem e vivenciam a experiência de serem diagnosticadas com câncer de mama. A pesquisa social de campo envolve um universo de oito mulheres que passaram por esta trajetória sendo uma delas a própria autora, que traça uma auto-análise de sua experiência com este diagnóstico. Um aspecto específico com o qual a pesquisa busca se ocupar é identificar o lugar que a espiritualidade ocupa na história das mulheres entrevistadas. O câncer de mama apresenta um alto índice da doença no Rio Grande do Sul. Conforme a Revista Gaúcha de Enfermagem, o câncer de mama é a maior causa de morte de mulheres entre 30 a 50 anos de idade. De acordo com as estatísticas do Instituto Nacional do Câncer, o câncer de mama é o segundo tipo mais freqüente de câncer do mundo. Assim sendo, o câncer de mama ainda é uma doença que leva à morte, mesmo com o enorme avanço da medicina. Mas, há quem sobreviva o temido e assustador processo da descoberta e tratamento do câncer. Com a doença do câncer vem também a angústia da finitude. O presente trabalho baseia suas reflexões teóricas em Eugen Drewermann e Paul Tillich e como os mesmos descrevem a angústia existencial do ser humano, diferenciando-a do medo real, que tem o seu objeto definido, enquanto que a angústia existencial tem como fonte de sua permanente ameaça o nada. A angústia e a culpa estão relacionadas, estando a culpa ligada ao afastamento de Deus. A aceitação do ser finito, através da coragem do ser, ato de fé por graça divina, substitui, em última análise, a angústia por confiança no Deus da Vida. Os autores, ambos os teólogos, apontam para a interdisciplinaridade. A proposta dessa pesquisa é de atuar em colaboração com outras ciências, de maneira especial com a Psicologia Analítica. Uma pessoa em crise, que trabalha seus processos interiores, poderá ter facilitado sua entrega confiante a Deus. É ainda sucintamente apresentado, conforme Drewermann, como o patológico se manifesta na vida de pessoas que, assim como todas as demais pessoas, carecem da experiência da graça de Deus para sua libertação. A pesquisa finaliza trazendo a abordagem de Erika Schuchardt, formulada no modelo de uma espiral de oito fases, pelas quais passam as pessoas em crise. / The purpose of this dissertation is to examine how women perceive and live the experience of receiving a diagnostic of breast cancer. Field research involves a total of eight women who have experienced this situation, one of them being the authors self-reflection on a cancer diagnostic. A specific aspect of the present research is to identify the place that spirituality takes in the life history of the interviewed women. The State of Rio Grande do Sul presents a high rate of breast cancer. According to the agency Revistal Gaúcha de Enfermagem, breast cancer is the death main cause among women between thirty and fifty years old. Statistics of the National Cancer Institute indicates that breast cancer occupies the second place among the different sorts of cancer. Even though medicine has shown great advance in the last decades, breast cancer still continues to be a deadly disease. However, there are people who survive the fearsome and frightening fatal process caused by this disease. With cancer comes along the human finitude anxiety. The present work bases its reflection on how Eugen Drewermann and Paul Tillich describe the human existential anxiety distinguishing it from real fear. According to the authors real fear has its object defined, while existential anguish has as source of its permanent threat, the nothingness. Anguish and guilt are connected, but guilt is associated to the alienation from God. Acceptance of the existence as finite, through the courage of Being, which is an act of faith by divine grace, replaces anguish by trust in the God of Life. The authors above, both theologians, aim at interdisciplinarity. The purpose of this research is to act in collaboration with other sciences, specially with Analytical Psychology. A person in crisis working her/his interior processes might have facilitated the confident surrender to God. It is also briefly presented, according to Drewermann, how pathology evidences itself in the life of a person who, as all other persons, lacks the experience of the grace of God to his/her liberation. Concluding, the research approaches Erika Schuchartds theory formulated in the model for working through crisis in eight spiral phases.

Contexte - Considérées comme un progrès thérapeutique notable en cancérologie, les thérapies ciblées ne sont pas sans effet secondaire, en particulier sur le plan dermatologique. Très peu de données sont actuellement disponibles quant à leurs retentissements sur la qualité de vie des patients. Le service de dermatologie de Gustave Roussy a développé un protocole de recherche prospectif (SKINTARGET) consacré à cette thématique afin de pouvoir proposer des mesures préventives et/ou curatives adaptées. Inscrite dans ces travaux, notre thèse avait pour objectif principal de décrire les changements observés du point de vue de l’état émotionnel, de l’image corporelle et des interactions sociales avec l’apparition des atteintes cutanées, en s’intéressant à la place des représentations associées au traitement dans le processus d’ajustement des patients à ces symptômes.<p>Méthode - Il s’agissait d’une étude comprenant quatre temps d’évaluation (initiation du traitement, un, deux et trois mois après), qui associait de façon concomitante deux modes d’évaluation :quantitatif (questionnaires :IPQ-R, DLQI, POMS, BDI-II, QIC) et qualitatif (entretiens semi-directifs). L’inclusion était proposée par les oncologues aux patients allant débuter un traitement par thérapie ciblée. Les analyses statistiques ont été menées à partir du logiciel SPSS version 14.0 ;les analyses des entretiens ont combiné méthode thématique et méthode par questionnement analytique, en s’appuyant sur le modèle théorique de Pedinielli. <p>Résultats - Quatre-vingt-deux patients ont donné leur accord pour la recherche biomédicale, 62 d’entre eux ont accepté de participer à l’étude psychologique. La partie quantitative a été complétée par 33 patients, pour moitié hommes (âge moyen 56 ans), soignés pour un cancer métastatique cutané, pulmonaire, rénal ou thyroïdien. L’échantillon comptait une majorité de personnes en couple, avec enfants, soit à la retraite soit en arrêt de travail. Quatre-vingt-quatorze pour cent a développé au moins un des principaux symptômes suivants :rash cutané, syndrome main-pied, alopécie ou photosensibilité. Les changements observés ont été un inconfort physique et une gêne à la réalisation des activités du quotidien. Aucun signe de perturbation de la sphère émotionnelle, de l’image du corps et des relations sociales n’a été mis en évidence au cours des trois premiers mois de traitement. Les symptômes dermatologiques ont majoritairement été rattachés par les patients à l’action du traitement, sans être interprétés comme signes de son efficacité. La représentation d’un médicament contrôlant la maladie a émergé comme un des facteurs significativement associés aux variations de l’impact des toxicités cutanées sur la qualité de vie. <p>La partie qualitative a concerné 41 patients, dont les caractéristiques médicales et socio-démographiques étaient très similaires à celles de l’échantillon quantitatif. Pour une majorité les effets secondaires dermatologiques ont été « embêtants », « gênants », quelquefois « impressionnants », voire « perturbants » lorsqu’ils entraînaient douleurs, difficultés à la mobilité ou troubles du sommeil, mais sont restés « gérables, supportables ». Les représentations associées au traitement, très positives, sont apparues comme un élément soutenant dans l’ajustement des patients. Du discours des patients en souffrance psychologique sont ressorties une défiance vis-à-vis du regard d’autrui et une impossibilité d’amorcer le travail de renoncement nécessaire à l’intégration des transformations liées au cancer et à ses traitements. L’origine de cette souffrance serait un débordement des défenses psychiques par une angoisse de mort :la difficulté pour restaurer l’état d’équilibre psychique antérieur provenant de l’activation concurrentielle de deux dynamiques, l’une surnommée « substantielle », l’autre « identitaire ».<p>Discussion - Ces résultats rejoignent les données de la littérature en concluant à un impact d’intensité faible à modérée des toxicités cutanées sur la qualité de vie pour une majorité de patients. Contrairement à ce qui était attendu, il n’a pas été observé de changement sur le plan de l’état émotionnel, de l’image corporelle et des interactions sociales. L’investissement positif du traitement, la réappréciation des valeurs, le très bon état général des patients et l’optimisme ont été évoqués pour expliquer non seulement l’absence de perturbation, mais aussi les très bas niveaux d’anxiété, de tristesse et de fatigue globalement rapportés. L’importance de l’encadrement soignant et médical a également été soulignée parce qu’il sécurise les patients en anticipant les difficultés, en informant et en proposant une prise en charge suivie.<p>Conclusion - Le développement croissant des thérapies ciblées devrait s’accompagner d’un renforcement des mesures de prévention et de prise en charge des effets secondaires dermatologiques, qui requiert formation et sensibilisation des acteurs de soin à cette problématique, en rappelant la dimension singulière du vécu de chaque patient et l’impossibilité de le réduire à l’observable médical.<p>Background - Considered as a significant therapeutic progress in cancer, targeted agents are not without side effects, particularly dermatological ones. Very little information is presently available about their consequences on patients’ quality of life. The dermatological team of Gustave Roussy has developed a prospective research (SKINTARGET) in order to provide preventive and curative adapted care. Integrated into this work, our thesis aimed to describe the psychosocial changes occurring with cutaneous toxicities and to explore the implication of treatment representations in the patient’s adjustment process.<p>Methods - The study included four phases of evaluation (treatment initiation, one, two and three months after) and used simultaneously two methods: a quantitative one (questionnaires: IPQ-R, DLQI, POMS, BDI-II, BIQ) and a qualitative one (semi-structured interviews). The inclusion was proposed by oncologists to patients who were about to start a targeted therapy. Statistical analyzes were conducted with SPSS 14.0 software; analyzes interviews combined thematic approach and analytical questioning methods and referred to the Pedinielli’s theoretical model.<p>Results - Eighty- two patients gave their consent for biomedical research, 62 of them agreed to participate to the psychological study. The quantitative part was completed by 33 patients (50% men, mean age 56 years) treated for metastatic skin, pulmonary, renal or thyroid cancer, who were mostly in a relationship with children, either retired or stopped working. Eighty- four percent developed at least one of the following main symptoms: skin rash, hand-foot syndrome, alopecia or photosensitivity. The observed changes were characterized by a physical discomfort and difficulties in the activities of daily life. No sign of disturbance was noted in emotional domain, body image or social relations during the first three months of treatment. Dermatological symptoms were mainly related by patients to treatment action, without being interpreted as an evidence of its effectiveness. The representation of a drug controlling the disease was significantly associated with a lower impact of skin problems on the quality of life.<p>The qualitative part included 41 patients. Medical and sociodemographic characteristics were very similar to those of the quantitative sample. For most people, dermatological side effects were "boring", "uncomfortable", sometimes "impressive" or "disturbing" when they were associated with pain, mobility difficulties or sleeping troubles, but remained "manageable, bearable". The very positive treatment representations appeared as a supporting element in patients’ adjustment. Psychological distress seemed appear when patients feared being stared by others and failed to engage themselves in the renouncement work which is needed to adjust oneself to the transformations related to cancer and its treatments. In such situation psychological distress was supposed to come from an overflow of the psychic defences by a fear of death; the difficulty to restore mental balance would be explained by the activation of two competitive dynamics, which struggle for the organism and the identity survival.<p>Discussion - These results are consistent with the literature data. The skin toxicities impact on quality of life is mild to moderate for a majority of patients. Contrary to our expectations, there was no evidence of change in the domains of emotions, body image and social interactions. The positive investment of treatment, a reassessment of values, the very good physical state of patients and the influence of optimism in patients state of mind have been cited to explain not only the absence of disturbance, but also the very low levels of anxiety, sadness and fatigue generally reported. The importance of the caregiving provided by health professionals was also highlighted: anticipating difficulties, giving information about side effects and effectively managing problems secure patients.<p>Conclusions - The growing development of targeted therapies implies strengthening prevention and management of dermatological side effects. Moreover, it requires to aware and to train more health professionals to this problem, recalling the singular dimension of each patient which can not being reduced to the medical observable.<p> / Doctorat en Sciences Psychologiques et de l'éducation / info:eu-repo/semantics/nonPublished

Doctorat en sciences psychologiques / info:eu-repo/semantics/nonPublished

Doctorat en sciences sociales, politiques et économiques / info:eu-repo/semantics/nonPublished

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O diagnóstico de câncer de mama desencadeia mudanças no funcionamento não só da mulher assim diagnosticada, mas também em toda a sua família, afetando, inclusive, as relações afetivas e conjugais. As mulheres submetidas à mastectomia podem apresentar dificuldades durante o retorno às atividades profissionais, aos convívios social e familiar, como também no âmbito do relacionamento sexual. Há um grande impacto na autoestima. A qualidade de vida é acometida e sua avaliação é importante para a detecção dos aspectos que podem interferir no bem estar dessas mulheres. O estudo proposto teve por objetivo analisar a percepção sobre a comunicação e as emoções presentes na conjugalidade por parte de mulheres mastectomizadas bem como sobre a qualidade de vida pós-cirurgia. A pesquisa, de natureza quantitativa, estudou 50 mulheres mastectomizadas, com idades entre 30 a 55 anos, atendidas na enfermaria de um hospital de referência para o câncer de mama, da cidade do Recife. Foram utilizados como instrumentos de coleta de dados o Questionário genérico de Qualidade de Vida da European Organization for Research and Treatment of Câncer Quality of Life (EORTC) QLQ-C30 versão 3.0; o Questionário para avaliar a dinâmica conjugal, e o Questionário de Qualidade de Vida Supplementary Questionnaire Breast Câncer Module QLQ-BR23 versão 1.0. Para a análise estatística, foram utilizados os Softwares SPSS 13.0 para Windows e o Excel 2010. Os resultados foram inicialmente avaliados através de uma análise descritiva, baseada na composição de tabelas de frequência ou gráficos, além do cálculo de algumas medidas descritivas (média, desvio padrão, valores mínimo e máximo de série). Para avaliação de significância estatística para as estimativas realizadas foram utilizados os intervalos de confiança a 95% e o valor de 0,05 para a probabilidade associada aos testes (valor de p). Para verificar a existência de associação entre as variáveis categóricas foram utilizados o: Teste Qui-Quadrado e o Teste Exato de Fisher e, na comparação dos grupos, o Teste de Mann-Whitney (Não Normal). Os resultados apontam para o companheirismo entre os cônjuges, havendo diálogo constante do casal; a maior parte das mulheres era sexualmente ativa e respondeu que a atividade sexual é satisfatória. Também foi observada a presença de comprometimento da autoimagem e dor na maioria das mulheres interferindo na qualidade de vida. Diante desses resultados, considera-se relevante incentivar a prevenção e o diagnóstico precoce da doença; prover um acompanhamento de uma equipe multidisciplinar de saúde, para acolher esses casais, com o intuito de favorecer um melhor enfrentamento da doença.

Doctorat en sciences psychologiques / info:eu-repo/semantics/nonPublished