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191.
Providing medical management updates and long-term support to families with hereditary cancer syndromes in rural areas is
a challenge. To address this, we designed a one-day retreat for BRCA1/2 carriers in our region. The retreat included educational updates about medical management, genetic privacy and discrimination,
and addressed psychological and family issues. Evaluations completed at the conclusion of the retreat were overwhelmingly
positive with requests for a similar event in the future. The impact of this retreat on a variety of health behaviors was
assessed. Eligible participants completed questionnaires before and 6 months after the retreat. Questionnaires focused on
lifestyle, cancer screening and prevention practices, psychological history and distress, decision-making regarding genetic
testing, and family communication issues. For individuals who completed both the pre and post retreat questionnaires, one-half
made lifestyle changes and nearly two-thirds increased cancer screening, initiated chemoprevention, completed or planned to
complete preventative surgery in the future. We conclude that this type of forum provides a valuable opportunity for BRCA carriers and their families to receive updated medical information, share personal experiences, provide and receive support,
as well as change health behaviors. 相似文献
192.
Palmero EI Ashton-Prolla P da Rocha JC Vargas FR Kalakun L Blom MB Azevedo SJ Caleffi M Giugliani R Schüler-Faccini L 《Journal of genetic counseling》2007,16(3):363-371
Hereditary breast cancer (HBC) accounts for 5–10% of breast cancer cases and it significantly increases the lifetime risk
of cancer. Our objective was to evaluate the sociodemographic variables, family history of cancer, breast cancer (BC) screening
practices and the risk profile of cancer affected or asymptomatic at-risk women that undergo genetic counseling for hereditary
breast cancer in public Brazilian cancer genetics services. Estimated lifetime risk of BC was calculated for asymptomatic
women using the Gail and Claus models. The majority of women showed a moderate lifetime risk of developing BC, with an average
risk of 19.7% and 19.9% by the Gail and Claus models, respectively. The average prior probability of carrying a BRCA1/2 gene mutation was 16.7% and overall only 32% fulfilled criteria for a hereditary breast cancer syndrome as assessed by family
history. We conclude that a significant number of individuals at high-risk for HBC syndromes may not have access to the benefits
of cancer genetic counseling in these centers. Contributing factors may include insufficient training of healthcare professionals,
disinformation of cancer patients; difficult access to genetic testing and/or resistance in seeking such services. The identification
and understanding of these barriers is essential to develop specific strategies to effectively achieve cancer risk reduction
in this and other countries were clinical cancer genetics is not yet fully established. 相似文献
193.
Strømsvik N Nordin K Berglund G Engebretsen LF Hansson MG Gjengedal E 《Journal of genetic counseling》2007,16(1):105-117
This qualitative study explores how 29 Swedish patients with Multiple Endocrine Neoplasia type 1 (MEN1) experience living
with the condition, appraisal of the clinical follow-up program, and surveys their future expectations. The aim of this study
is to build knowledge about this patient group in order to provide optimal care. The participants describe physical, psychological,
and social limitations in their daily activities and how these limitations influence quality of life. Our findings indicate
that a majority of patients have adjusted to their situation, describing themselves as being healthy despite physical symptoms
and treatment. The participants received decent care in the clinical follow-up program, - however, greater effort should be
put into patient information. These patients might benefit from genetic counseling. Health professionals involved should recognize
their potential impact and influence on a patient’s ability to adjust to these circumstances. Antonovsky`s Sense of Coherence
theory is used to discuss these findings. 相似文献
194.
Siglen E Bjorvatn C Engebretsen LF Berglund G Natvig GK 《Journal of genetic counseling》2007,16(5):607-615
This study examines the association between Sense of Coherence and anxiety and depression amongst patients at risk of hereditary
cancer receiving genetic counseling. When writing this article, 144 patients referred for genetic counseling due to a suspicion
of hereditary cancer in the family were recruited for this multicentered longitudinal study on the psychosocial aspects of
genetic counseling in Norway. A total of 96 (66%) patients responded to the follow-up survey distributed 6 months after genetic
counseling. This survey included the Sense of Coherence-29 Scale, Impact of Event Scale, and Hospital Anxiety and Depression
Scale. Multiple regression analyses were applied. Our results show association between cancer-related distress and symptoms
of anxiety and depression. Sense of Coherence is significantly associated with both anxiety and depression. The hypothesis
of Sense of Coherence buffering cancer-related distress and the possible impact of these findings for genetic counseling are
discussed. 相似文献
195.
The goal of the study was to assess two types of school‐based interventions—a class intervention (integrated) and a small group counseling (segregated) intervention for highly aggressive children—and to determine which is more efficacious in reducing individual and classroom aggression, lessening internalizing and externalizing behavior, and increasing positive classroom relationships. The study, conducted in Israel, included 904 children from 13 schools. In each school, one age level was selected and divided randomly into three experimental conditions: psychoeducational class intervention, small group counseling, and control. In all classrooms, the highly aggressive children were identified a priori (n=166). Analyses were conducted separately for the aggressive children and their nonaggressive classmates, in a nested procedure (mixed models). Results showed similar positive outcomes on all variables in both treatment groups, and higher compared with the control group. The discussion focuses on the strengths of each type of intervention. Aggr. Behav. 35:342–356, 2009. © 2009 Wiley‐Liss, Inc. 相似文献
196.
June A. Peters Carol L. McAllister Wendy S. Rubinstein 《Journal of genetic counseling》2001,10(2):151-168
This is a report of the preliminary findings of a brief exploratory ethnographic study in a cancer diagnosis and treatment clinic. The main research purpose was to explore the meaning of cancer and cancer treatment to patients themselves and to their relatives and close friends. The methods are described in detail in a paper focusing on the experiences of being a novice ethnographer (Peters et al. (2001) J Genet Counsel 10(2):133–150.). The preliminary results of this exploratory fieldwork indicate that the experience of attending a cancer treatment clinic for evaluation and/or treatment is a complex social, emotional as well as medical process for patients and families. Themes with relevance to genetic counselors that emerged from this early observation period included ideas about causes of cancer, the complex nature of families and kinship, coping and support, use of food, and healing. These initial findings have implications for genetic counseling practice and hopefully will stimulate more qualitative social and behavioral research in cancer genetic counseling. 相似文献
197.
Philip J Ivanhoe 《The Journal of religious ethics》2014,42(1):22-44
Scholars in the humanities and social sciences are keenly aware of and often deeply engaged with more global or cosmopolitan approaches to their respective fields; nevertheless, theories of cosmopolitanism remain exceedingly controversial and arise exclusively from Western philosophical sources. Recently, Martha Nussbaum presented a contemporary Western liberal cosmopolitan theory and sought to integrate it with a call for multicultural education. In this essay, I describe, analyze, and criticize Nussbaum's conception of cosmopolitanism and argue that it does not sit comfortably with her laudable advocacy of multicultural education. I then draw upon resources within the Confucian tradition to sketch two alternative conceptions of cosmopolitanism, which I argue are both more powerful than what Nussbaum proposes and better support the kind of multicultural education she so eloquently advocates. 相似文献
198.
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200.
Maternal serum screening for fetal Down syndrome has been integrated into routine antenatal care in most clinics in Taiwan. We examined the attitudes toward serum screening and the possible implications in women with positive results. From January to July 1995, 276 women were referred to the Genetic Counseling Clinic, Mackay Memorial Hospital for amniocentesis because of positive screening results, and 214 participated in this study. All women opted for amniocentesis after genetic counseling. Over 40% stated that they made decisions independently after being informed of the serum screening. Need for certainty was the most frequently mentioned reason. Two-thirds believed that serum screening could provide a diagnosis. Almost all women would apply for maternal serum screening for future pregnancies. This study demonstrated that Chinese women need more counseling and autonomy regarding maternal serum screening. 相似文献