The purpose of the present study was to examine the role that specific factors play in the quality of life (QL) for women with recurrent breast cancer.

研究背景: 隨著乳腺癌患者存活率的不斷上升及其存活時間的不斷延長，癌病倖存已成為一個重要的慢性疾病管理問題。之前在該領域的研究主要集中於生活質量的測量。然而，癌病倖存研究應該超出這一範疇而更好地去瞭解乳腺癌倖存者的真實體驗。癌病倖存是一個新興而複雜的概念，它包含了動態的、多維的以及社會文化的觀點。但是，衛生專業人員受限於現有的知識未能為中國大陸乳腺癌患者的長期倖存做好準備。 / 研究目的: 本研究目的是從中國大陸女性的視角詳盡闡述乳腺癌倖存者的親身體驗。具體研究目標包括：1）乳腺癌倖存者的生活質量；2）與乳腺癌倖存者生活質量相關的因素；3）乳腺癌患者的倖存體驗；4）社會人口學及臨床學特徵對於乳腺癌倖存體驗的影響；5）建立一種與文化相關的概念模型用以解釋中國婦女乳腺癌患者的倖存體驗。 / 研究方法: 本研究採用混合研究方法，分兩個階段進行。先是定量法（第一階段），其次是定性法（第二階段）。第一階段是對乳腺癌倖存者其生活質量及相關因素進行橫斷性調查。測量工具包括生活質量-癌症倖存者量表及社會支持問卷簡表。該階段的調查結果將指導第二階段的目的性抽樣並建立半結構式訪談計劃。第二階段是對選定倖存者進行深入訪談以探究她們的癌症倖存體驗。採用內容分析法對訪談數據的潛在及顯性內容進行分析。然後對不同定義組中的定性數據進行比較，探索社會人口學及臨床學特徵對乳腺癌倖存體驗的影響。最後對定量和定性數據進行對比和比較，以確定並探討癌病倖存體驗的組成元素和模型開發。 / 研究結果：在完成第一階段的100位倖存者中，平均年齡為53.75 歲 (SD=7.27)，治療完成後存活時間的中位數為44 個月 (四分位範圍=23-61)。總體生活質量平均值為6.55，範圍3.68 - 8.89。在身體分量表中顯示生活質量最高值，而在靈性分量表找到其最小值。多元回歸分析表明，存活期的長短、對社會支持的滿意度以及家庭年收入與生活質量均顯著相關。 / 29位倖存者完成了第二階段的研究。結果顯示用於描述倖存經驗的七個範疇，包括：體驗令人痛苦的症狀；與不確定性進行抗爭；在女性特質及性行為上的改變；忍受社會壓力；被關照和支持；反思和個人成長；生存並向前發展。定性數據的比較顯示，對於存活時間低於5年，或者家庭年收入較低，亦或感知的生活質量較低的女性，她們傾向於報告負面的倖存經驗。通過提取定量和定性階段上主要的研究結果建立一個概念模型，用以解釋中國女性是如何理解乳腺癌倖存經驗的。它表明，乳腺癌倖存經驗在本質上是多維的。治療完成後，乳腺癌患者在生活變化上會有消極與積極的雙重性，會對生活質量評估產生影響。此外，乳腺癌倖存經驗也不是一成不變的。它是一個動態的應對過程，具有幾種策略以應對癌症導致的生活變化。 / 研究結果：本研究對中國文化背景下乳腺癌倖存經驗提供了證據。本研究全面而深入的瞭解乳腺癌患者倖存經驗，並為進一步發展測量工具以及具備文化敏感性的心理干預提供了基礎，以解決中國女性的倖存經驗的問題。 / Background: With the increasing survival rate and length of survival in breast cancer, cancer survivorship has become an important chronic illness management issue. Previous studies in this area mainly focus on appraisal of quality of life (QOL). However, cancer survivorship studies should go beyond QOL to better understand breast cancer survivor’s experience of living with the disease. Cancer survivorship appears as an emerging but complex concept incorporating dynamic, multidimensional, and socio-cultural perspectives. Little information exists addressing breast cancer survivorship experience in mainland China that impedes health professionals’ ability to deliver quality of cancer care. / Aim: To develop an understanding of breast cancer survivorship experience from the perspective of mainland Chinese women. Specific objectives included exploring 1) women’s perceived QOL; 2) factors associated with women’s QOL; 3) women’s perception of breast cancer survivorship experience; 4) the influence of socio-demographic and clinical characteristics on the women’s perception of their survivorship experience after breast cancer; and 5) to develop a culturally relevant conceptual model to explain Chinese women’s breast cancer survivorship experience. / Methods: A mixed methods study with two phases was conducted, quantitative approach (Phase One) followed by qualitative approach (Phase Two). Phase One was a cross-sectional survey on Chinese breast cancer survivors to investigate their QOL and its associating factors. Instruments included Quality of Life -- Cancer Survivor Scale and six-item Social Support Questionnaire. Findings in this phase contributed to inform the purposive sampling and develop a semi-structured interview schedule for Phase Two. In-depth interviews on selected survivors were conducted to explore their perceptions of cancer survivorship experience. Content analysis was used to analyze both latent and manifest meaning of interview data. Comparisons of qualitative data across defined groups were made to explore the influence of socio-demographic and clinical characteristics on breast cancer survivorship experience. Quantitative and qualitative data were compared and contrasted to identify and explore elements in cancer survivorship experience and model development. / Results: Among 100 survivors who completed Phase One, the mean age was 53.75 years (SD=7.27), and the median length of survivorship since completion of treatment was 44 months (IQR=23-61). The mean overall QOL was 6.55, with a range of 3.68 -8.89. The highest QOL was found in the physical subscale, and the lowest in the spiritual subscale. Multivariate regression analysis identified that length of survivorship, satisfaction with social support, annual household income were significantly associated with QOL. / Twenty-nine survivors completed Phase Two. Seven categories emerged describing the survivorship experience included experiencing distressful symptoms; struggling with uncertainty; alterations in femininity and sexuality; living with social stress; being cared for and supported; reflections and personal growth; and surviving and moving forward. Comparisons of qualitative data revealed that women with less than five years of survivorship, or low annual household income, or low perceived QOL tended to report negative survivorship experience. A conceptual model was developed by drawing the key findings of quantitative and qualitative phases to explain how Chinese women perceive the breast cancer survivorship experience. It reveals that breast cancer survivorship experience is multidimensional in nature, with a duality for the negative and positive aspects of life changes after completion of treatment, contributing to influence appraisal of QOL. Furthermore, breast cancer survivorship experience is not static but a dynamic coping process with several strategies for dealing with life changes that result from cancer. / Conclusions: The study provides evidence of several components of breast cancer survivorship within Chinese cultural context. This offers a comprehensive and insightful understanding of the experience after surviving breast cancer, and a basis for further inquiry for developing an instrument and culturally sensitive psychosocial intervention to address Chinese women’s survivorship experience. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Cheng, Huilin. / Thesis (Ph.D.)--Chinese University of Hong Kong, 2012. / Includes bibliographical references (leaves 252-283). / Electronic reproduction. Hong Kong : Chinese University of Hong Kong, [2012] System requirements: Adobe Acrobat Reader. Available via World Wide Web. / Abstract also in Chinese; appendixes inchludes Chinese. / Chapter CHAPTER ONE --- INTRODUCTION --- p.1 / Background of the study --- p.2 / Breast cancer incidence --- p.2 / Breast cancer diagnosis and treatments --- p.3 / Breast cancer survival --- p.5 / Cancer survivorship --- p.7 / Overview of cancer survivorship --- p.7 / Breast cancer survivorship research --- p.10 / Rationale for the study --- p.12 / Purpose of the study --- p.13 / Organization of the thesis --- p.13 / Chapter CHAPTER TWO --- LITERATURE REVIEW --- p.15 / Literature search --- p.15 / Search strategy --- p.15 / Selection criteria --- p.16 / Definition of cancer survivor --- p.17 / Concept of cancer survivorship --- p.18 / Concept of quality of life (QOL) --- p.22 / Definitions --- p.22 / Measurements --- p.25 / Generic instrument --- p.26 / Cancer-specific instrument --- p.26 / Cancer survivor-specific instrument --- p.27 / Distinctions between cancer survivorship and QOL --- p.29 / Quantitative studies on breast cancer survivorship --- p.30 / Overall QOL and QOL across different domains of breast cancer survivors --- p.30 / Overall QOL --- p.30 / Physical effect --- p.31 / Psychological effect --- p.34 / Social effect --- p.36 / Spiritual effect --- p.37 / Factors affecting the QOL of breast cancer survivors --- p.40 / Socio-demographic factors --- p.41 / Clinical factors --- p.42 / Social support --- p.47 / Ethnicity --- p.49 / Methodological critique of quantitative studies --- p.52 / Qualitative studies on breast cancer survivorship --- p.54 / Multidimensional nature of breast cancer survivorship --- p.54 / Dynamic nature of breast cancer survivorship --- p.57 / Influence of ethnicity on breast cancer survivorship --- p.60 / Methodological critique of qualitative studies --- p.62 / Mixed methods study on breast cancer survivorship --- p.63 / Summary --- p.65 / Chapter CHAPTER THREE --- METHODOLOGY --- p.67 / Study aim and objectives --- p.67 / Definitions of terms --- p.68 / An overview of mixed methods research --- p.69 / Philosophical foundation of mixed methods research --- p.71 / Research design: Sequential explanatory mixed methods --- p.72 / Overview of the selected design --- p.72 / Justification for the selected design --- p.74 / Integration of data from Phases One and Two --- p.76 / Study setting --- p.78 / Description of the Phase One study method --- p.79 / Sampling --- p.80 / Sample size --- p.80 / Sampling criteria --- p.80 / Instruments --- p.81 / Socio-demographic and clinical characteristics --- p.81 / Perceived social support --- p.81 / QOL --- p.82 / Sexual QOL --- p.85 / Willingness to participate in Phase Two --- p.86 / Data collection procedures --- p.86 / Quantitative data analysis --- p.87 / Descriptive analysis --- p.87 / Regression analysis --- p.88 / Description of the Phase Two study method --- p.88 / Sample and sampling --- p.89 / Sampling and selection criteria --- p.89 / Sample size --- p.90 / Data collection method --- p.91 / Semi-structured face-to-face interview --- p.91 / Interview schedule --- p.92 / Data collection procedure --- p.93 / Qualitative data analysis --- p.94 / Content analysis --- p.94 / Comparative analysis in qualitative research --- p.97 / Ensuring rigor of qualitative inquiry --- p.99 / Justification for using validity and reliability --- p.99 / Strategies for achieving validity --- p.100 / Strategies for achieving reliability --- p.101 / Ethical considerations --- p.101 / Pilot study --- p.102 / Pilot study of Phase One --- p.102 / Pilot study of Phase Two --- p.104 / Chapter CHAPTER FOUR --- FINDINGS FOR PHASE ONE --- p.106 / Characteristics of participants --- p.106 / Socio-demographic characteristics --- p.106 / Clinical characteristics --- p.108 / Perceived social support --- p.110 / QOL --- p.111 / Physical domain --- p.112 / Psychological domain --- p.113 / Social domain --- p.114 / Spiritual domain --- p.115 / Sexual domain --- p.116 / Factors associated with QOL --- p.117 / Differences in overall QOL and QOL domains by socio-demographic and clinical characteristics, as well as perceived social support --- p.118 / Factors associated with overall QOL and different QOL domains --- p.126 / Participants’ willingness to participate in Phase Two of the study --- p.129 / Contribution of Phase One findings to the development of Phase Two --- p.132 / Selection criteria for purposive sampling --- p.132 / Development of interview schedule --- p.134 / Summary --- p.135 / Chapter CHAPTER FIVE --- FINDINGS FOR PHASE TWO --- p.137 / Characteristics of participants --- p.137 / Categories identified from content analysis --- p.140 / Experiencing distressful symptoms --- p.142 / Memory and concentration problems --- p.142 / Lymphedema --- p.142 / Fatigue --- p.143 / Struggling with uncertainty --- p.144 / Fear of recurrence --- p.144 / Fatalism --- p.145 / Unpredictability of illness --- p.146 / Alterations in femininity and sexuality --- p.147 / Poor body image --- p.147 / Changes in sexual activity --- p.149 / Living with social stress --- p.150 / Being stigmatized --- p.150 / Financial burden --- p.151 / Being cared for and supported --- p.152 / Family members and close friends --- p.153 / Cancer self-help group --- p.154 / Workplace --- p.155 / Health professionals --- p.155 / Reflections and personal growth --- p.156 / Re-prioritizing life perspectives --- p.156 / Change in personal character --- p.157 / Gaining inner strength --- p.158 / Surviving and moving forward --- p.159 / Performing self-care --- p.159 / Attitude towards having cancer --- p.160 / Hope for the future --- p.162 / Sense of normalcy --- p.163 / Comparison of categories and subcategories by selected characteristics --- p.164 / Comparison of categories between participants with high- and low-perceived QOL --- p.164 / Comparison of categories between participants with high- and low-annual household income --- p.167 / Comparison of categories between participants with short- and long- term survivorship --- p.169 / Summary --- p.170 / Chapter CHAPTER SIX --- DISCUSSION --- p.171 / Purpose of integration --- p.171 / Convergent findings --- p.172 / Complementary findings --- p.173 / Socio-demographic background of the participants --- p.174 / Clinical characteristics of the participants --- p.176 / Women's perception of QOL --- p.178 / Women's perceived levels of overall QOL and specific domains --- p.178 / Overall QOL --- p.178 / QOL in the physical domain --- p.179 / QOL in the psychological domain --- p.180 / QOL in the social domain --- p.181 / QOL in the spiritual domain --- p.182 / QOL in the sexual domain --- p.183 / Factors associated with women’s perceived levels of QOL --- p.184 / Socio-demographic factors influencing women’s perceived QOL --- p.184 / Clinical characteristics influencing women’s perceived QOL --- p.185 / Women's perception of social support and QOL --- p.186 / Social network and support --- p.186 / Social network and QOL --- p.188 / Satisfaction with social support and QOL --- p.189 / Women's perception of the breast cancer survivorship experience --- p.190 / Symptom distress --- p.191 / Uncertainty --- p.192 / Body image --- p.194 / Sexuality --- p.196 / Cancer-related stigma --- p.197 / Financial burden --- p.198 / Meaning in life --- p.200 / Self-identity --- p.202 / Fatalism --- p.203 / Attitude towards having cancer --- p.205 / Self-care/self-management --- p.206 / Hope --- p.207 / Summary --- p.208 / Chapter CHAPTER SEVEN --- A CONCEPTUAL MODEL TO EXPLAIN CHINESE WOMEN’S BREAST CANCER SURVIVORSHP EXPEREINCE --- p.210 / Overview of the proposed conceptual model --- p.210 / Content of the conceptual model --- p.211 / Function of the conceptual model --- p.212 / Perceived negative life change --- p.218 / Symptom distress --- p.218 / Uncertainty --- p.219 / Concern about body image --- p.220 / Cancer-related stigma --- p.222 / Financial burden --- p.223 / Perceived positive life change --- p.224 / Meaning in life --- p.224 / Positive self-identity --- p.225 / Social support --- p.226 / Co-existence of perceived negative and positive life changes --- p.228 / Perceived quality of life --- p.228 / Coping --- p.229 / Fatalistic voluntarism --- p.230 / Maintaining hope --- p.231 / Positive attitude --- p.232 / Performing self-care/self-management --- p.233 / Comparison between previous theory and the present model --- p.234 / Summary --- p.238 / Chapter CHAPTER EIGHT --- CONCLUSION --- p.239 / Limitations --- p.239 / Implications for nursing practice --- p.243 / Recommendations for future research --- p.248 / Conclusion --- p.251 / REFERENCE --- p.252 / APPENDIX --- p.284

published_or_final_version / abstract / toc / Community Medicine / Doctoral / Doctor of Philosophy

[Truncated abstract] A diagnosis of breast cancer is a life-changing event for any woman. For young women and their families it can be devastating. Women aged less than 45 years make up 20% of new cases of breast cancer diagnosed annually in Australia. With the trend for women to delay pregnancy, young women diagnosed with breast cancer may want at least the option to become pregnant after diagnosis and treatment but little is known about how pregnancy affects breast cancer or how breast cancer affects pregnancy. The aims of this thesis were to investigate how concurrent and subsequent pregnancy affects the development and outcomes of breast cancer and how breast cancer affects a concurrent or subsequent pregnancy. This study describes two groups of women identified from the entire Western Australian population less than 45 years of age when diagnosed with: 1. Gestational breast cancer, defined as breast cancer diagnosed while a woman is pregnant or in the first twelve months after completion of a pregnancy; and 2. Breast cancer who subsequently conceive. This study focused on three main areas; patterns of care and outcomes for women diagnosed with gestational breast cancer and those women diagnosed with breast cancer who subsequently conceived; the imaging and pathological characteristics of gestational breast cancer; and lastly the psychosocial issues associated with gestational breast cancer. ... This result was statistically significant. In an age and staged matched case control study lymph node negativity did not purvey a survival advantage for women diagnosed with gestational breast cancer as it did for the non- gestational breast cancer controls. Women diagnosed with breast cancer who have good prognosis tumours need not necessarily wait two years to become pregnant. In an age matched case control study women diagnosed with gestational breast cancer were more likely to have extensive insitu carcinoma, higher mitotic rates and tumours with medullary like features than their age matched controls. In a Cox's proportional hazards regression model which included pathological characteristics, there was no significant difference in survival for women diagnosed with gestational breast cancer were compared to women diagnosed with non-gestational breast cancers. The psychosocial issues for women diagnosed with gestational breast cancer are similar to other young women diagnosed with breast cancer but the effect on the 9 lives of women dealing with pregnancy and breast cancer simultaneously was much greater. The issues of breast cancer and pregnancy are complex at both a physical and psychological level. Much more research is needed to understand the mechanisms of how pregnancy affects breast cancer and its spread. Women who are pregnant when diagnosed with breast cancer or who consider pregnancy after their diagnosis need unbiased support from those around them. Survival is important but other survivorship issues may be just as important. To translate these findings into clinical practice and offer directions for future research eleven recommendations are proposed.

This study utilized ethnographic methodology to describe the communicative interactional patterns in families with a member who has breast cancer. Three breast cancer patients whose families were between the adolescent and launching of children developmental lifestage (McGoldrick & Carter, 1982) were chosen for the study. Data were collected from a series of three interview sessions over a period of four weeks with a two week time lapse between each of the interview sessions. Interview sessions were conducted in the families' homes by the researcher. All interviews were video and audio tape recorded for the purpose of preserving data for transcribing and coding. Research questions examined individual perception of meaning in regard to the disease, the structure and organization of the family in relation to the illness, and the effects of family communicative interaction on the course and management of the disease. Findings indicated that family members' responses to the diagnosis of "breast cancer were influenced by multi-generational "beliefs. All three families formulated a collective belief which supported the mother's belief about the disease. Each of the three families were mother-centered, and each mother seemed to use a metacommunicative approach to mediating family transactions. Each of the three fathers were reported as having been isolated and withdrawn within the family at various times. However, each father appeared to play a protective role in deflecting tension and stress away from the mother. All three couples appeared to have constructed an egalitarian relationship with an implicit agreement as to who was more skilled to hold the power within a particular context. In all three families, the generational boundaries were clearly defined. Conflict and affect were most generally expressed in an indirect manner through wit and sarcasm. However, because each of these three families were structured to allow for personal autonomous functioning of each individual member, patients were supported in seeking a modality outside of the family system to express more ambivalent feelings.

Indiana University-Purdue University Indianapolis (IUPUI) / Long-term psychosocial consequences of breast cancer are increasingly more important to study as survivors are living longer. However, the survivors do not experience cancer alone; their significant others often suffer just as much if not more than the survivors themselves. In this dissertation, we explore some long-term consequences of cancer within the context of the Social Cognitive Processing Theory (SCPT). SCPT proposes that an individual must be able to discuss their feelings in order to cognitively process a traumatic event, such as cancer. If discussions are hindered, in particular by a significant other, then one will be unable to work through his/her concerns, leading to poor psychological outcomes, such as depression and fear of recurrence. The purpose of this dissertation is to use SCPT to identify causal mechanisms of depressive symptoms and fear of recurrence using a large sample of young breast cancer survivors and their partners. For one paper, we also included a large set of older participants for comparison. This dissertation is divided into three distinct articles. Each article tests long-term consequences of breast cancer and its treatment on breast cancer survivors and their partners using SCPT to explain relationships. First we examine the hypothesized predictors of younger breast cancer survivors’ depressive symptoms including the partner variable of depressive symptoms. The second article addresses the partners by predicting their depressive symptoms using SCPT. The third and final article seeks to identify the relationship of predictors and FOR on both survivors and their partners again using SCPT. For survivors, structural equation modeling analyses found significant direct and indirect paths between depressive symptoms and theoretical variables, including social constraints (stb=.266, p<.001) and intrusive thoughts (stb=.453, p<.001). In partners, cognitive processing variables (intrusive thoughts and cognitive avoidance) mediated the relationship between social constraints and depressive symptoms (F(5,498)= 19.385, R2=.163, p<.001). And finally, cognitive processing mediated the relationship between social constraints and fear of recurrence both for survivors [F(3,213)= 47.541, R2=.401, p<.001] and partners [F(3,215)= 27.917, R2=.280, p<.001). The evidence from these studies supports the use of SCPT in predicting depressive symptoms and fear of recurrence in both long-term survivors and partners.

The word "cancer" has different meanings for different people. In general, it is synonymous with fatality, either imminent or in the forseeable future. How each person perceives and attributes meaning to this personal experience, varies according to idiosyncratic factors. These factors are constituted by each individual's unique internal make up and by external influences and it is the combination of the multiplicity of factors that bring about the personal attributions of meaning for each individual. The thesis examines the attributions of meaning of a sample of 42 women with breast cancer, through administration of a semi-structured interview and questionnaire, with follow up interviews. The theoretical concepts which are explored, examine the shift away from the traditional, Newtonian, linear-causal, neutral observer model (as in the traditional medical model), towards an ecosystemic, a-causal, contextual, holistic stance. Ecosystemic thinking is utilised in this research work, and this way of thinking is applied to the findings. In addition, a qualitative, descriptive approach is adopted, so that an in depth emphasis rather than a quantitative, empirical view of the patients in the sample, is undertaken. The applied questionaire focuses on the patient's experience of cancer diagnosis, with more specific reference to the side effects of the chemotherapy. The emphasis is towards the issue of anticipatory nausea and emesis and the possible use of hypnosis in relation to these effects. Each patient's attribution of meaning to these aspects forms the core of the thesis. The study discloses the wide variety of attributions of meaning held by different women in a similar predicament towards different aspects of that predicament. Concomitantly, the study highlights the limitations of the traditional, medical model which contribute to diminishing the personal understanding of each patient, and the impact of this on both treatment and outcome for each patient. / Psychology / D.Phil. (Psychology)

The word "cancer" has different meanings for different people. In general, it is synonymous with fatality, either imminent or in the forseeable future. How each person perceives and attributes meaning to this personal experience, varies according to idiosyncratic factors. These factors are constituted by each individual's unique internal make up and by external influences and it is the combination of the multiplicity of factors that bring about the personal attributions of meaning for each individual. The thesis examines the attributions of meaning of a sample of 42 women with breast cancer, through administration of a semi-structured interview and questionnaire, with follow up interviews. The theoretical concepts which are explored, examine the shift away from the traditional, Newtonian, linear-causal, neutral observer model (as in the traditional medical model), towards an ecosystemic, a-causal, contextual, holistic stance. Ecosystemic thinking is utilised in this research work, and this way of thinking is applied to the findings. In addition, a qualitative, descriptive approach is adopted, so that an in depth emphasis rather than a quantitative, empirical view of the patients in the sample, is undertaken. The applied questionaire focuses on the patient's experience of cancer diagnosis, with more specific reference to the side effects of the chemotherapy. The emphasis is towards the issue of anticipatory nausea and emesis and the possible use of hypnosis in relation to these effects. Each patient's attribution of meaning to these aspects forms the core of the thesis. The study discloses the wide variety of attributions of meaning held by different women in a similar predicament towards different aspects of that predicament. Concomitantly, the study highlights the limitations of the traditional, medical model which contribute to diminishing the personal understanding of each patient, and the impact of this on both treatment and outcome for each patient. / Psychology / D.Phil. (Psychology)

L’anxiété est très fréquente chez des patientes présentant un cancer du sein non-métastatique et peut avoir des répercussions importantes sur leur prise en charge médicale ainsi que sur leur bien-être physique et psychologique. S’il existe une littérature abondante sur le sujet, de nombreuses questions subsistent concernant l’évaluation et la prise en charge de l’anxiété durant la radiothérapie et dans la phase de rémission qui suit. <p><p>Ce travail de thèse a investigué ces questions au travers de deux études empiriques répondant aux objectifs suivants: (a) l’évaluation de l’évolution et des prédicteurs de l’anxiété durant le traitement de radiothérapie et (b) le développement et l’évaluation de l’efficacité de deux interventions psychologiques de groupe sur la régulation de l’anxiété après la radiothérapie. <p><p>Les résultats de la première étude (a) montrent que les niveaux d’anxiété les plus élevés sont observés lors de la simulation et de la première séance de radiothérapie et diminuent, ensuite, rapidement jusqu’à la fin du traitement. Bien que les niveaux d’anxiété soient relativement faibles pour de nombreuses patientes et semblent être de nature anticipatoire, certaines patientes présentent des niveaux cliniquement significatifs d’anxiété. De plus, un niveau cliniquement significatif d’anxiété à la première séance de radiothérapie est prédit par des facteurs liés à la communication entre les patientes et l’équipe de radiothérapie. Les résultats de la seconde étude (b) indiquent qu’une intervention de groupe à composantes multiples qui combine le soutien, les techniques cognitivo-comportementales et l’hypnose est plus efficace qu’une intervention de groupe à composante unique basée sur le soutien pour aider les patientes à mieux réguler leur anxiété après la radiothérapie. <p><p>Les résultats de ce travail de thèse soulignent l’importance d’évaluer l’anxiété chez les patientes à des moments critiques de leurs parcours médical et d’identifier les patientes qui présentent des niveaux cliniquement significatifs d’anxiété pour leur offrir un soutien adapté. Ces résultats suggèrent également d’améliorer les prises en charge afin de réduire l’anxiété des patientes. Des prises en charge offertes par les équipes de radiothérapie nécessitent une personnalisation de la communication établie avec les patientes et l’utilisation de stratégies proactives d’évaluation, d’information et de soutien. Des prises en charge psychologiques de groupe nécessitent quant à elles de combiner les composantes thérapeutiques les plus optimales. Enfin, ce travail de thèse souligne l’importance de continuer à développer et à améliorer les méthodes d’évaluation et d’intervention.<p> / Doctorat en Sciences Psychologiques et de l'éducation / info:eu-repo/semantics/nonPublished

[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.