Reports of information and support needs of daughters and sisters of women with breast cancer

The aim of this study was to describe the information and support needs of women who have primary relatives with breast cancer. The Information and Support Needs Questionnaire (ISNQ) was developed and revised from previous qualitative and pilot studies. The ISNQ addressed concepts of the importance of, and the degree to which, 29 information and support needs related to breast cancer had been met. The study sample consisted of 261 community-residing women who had mothers, sisters, or a mother and sister(s) with breast cancer. Data were collected using a mailed survey. In addition to the ISNQ, additional items addressed family and health history, breast self-care practices, perception of the impact of the relative's breast cancer and other variables. Also included were established and well-validated measures of anxiety and depression. The findings document women's priority information and support needs. The information need most frequently identified as very important was information about personal risk of breast cancer. Other highly rated needs addressed risk factors for breast cancer and early detection measures. Generally, the women perceived that their information and support needs were not well met. These findings illuminate needs of women for more information and support when they have close family relatives with breast cancer and opportunities for primary care providers to assist women in addressing their needs.     

Women's perceptions of their experiences with breast cancer: are their needs being addressed?

Breast cancer is the major cause of female deaths in Western Europe. In the United Kingdom, one woman in 14 is liable to develop this disease. An increasing emphasis on recognizing survival from cancer and remission periods of up to 20 years for breast cancer has important implications for health-care professionals. Care and support should effectively meet patients'needs to enable them to cope with the impact of a breast cancer diagnosis.
This paper provides an overview of selected literature on women's experiences of breast cancer. It places particular emphasis on their perceptions of the information they received about the disease and its treatment, and their perceptions of the support available to them.
The overview illustrates the problem of inadequacies in the information and support currently available to women with breast cancer. The neccessity for a more comprehensive and sensitive assessment of these women's needs is emphasized and suggestions are made for the direction of future resarch in this area.     

Racial/ethnic differences in adequacy of information and support for women with breast cancer

BACKGROUND: Providing breast cancer patients with needed information and support is an essential component of quality care. This study investigated racial/ethnic variations in the information received and in the availability of peer support. METHODS: In total, 1766 women who were diagnosed with nonmetastatic breast cancer and reported to the Los Angeles County Surveillance, Epidemiology, and End Results registry from June 2005 to May 2006 were mailed a survey after initial treatment. Among accrued cases, 96.2% met eligibility criteria (n = 1698), and 72% completed the survey. Race/ethnicity categories were white, African American, and Latinas (2 categories indicating low or high acculturation, which was determined by using the Short Acculturation Scale for Hispanics). Outcomes included receipt and need for treatment-related and survivorship-related information, difficulty understanding information, and support from women with breast cancer. RESULTS: More women reported receiving treatment-related information than survivorship-related information. After adjusting for sociodemographic, clinical, and treatment factors, a higher percentage of low acculturated Latina women desired more information on treatment-related and survivorship-related issues (P < .001). Significantly more Latina low acculturated women than white women reported difficulty understanding written materials, with 74.5% requiring help from others. A higher percentage of all minority groups compared with whites reported no contact with other women with breast cancer (P < .05) and reported less contact through family/friends (P < .05). Women rated the benefit of talking to other women high, particularly with emotional issues. CONCLUSIONS: Continued efforts to provide culturally appropriate information and support needs to women with breast cancer are necessary to achieve quality care. Latinas with low acculturation reported more unmet information and care support needs than women in other racial/ethnic groups.     

Indications of change in life perspective among women with breast cancer admitted to complementary care

In this study, qualitative content analysis was used in order to understand the reported changes of life perspective in interviews with 59 women with breast cancer who were admitted to complementary care. The aim of this research was to study women's perceived consequences as well as perceived causes of breast cancer and to explore aspects of importance to the women. The material was collected in semistructured interviews from women with breast cancer at different stages of the disease. The women received complementary care at an anthroposophic clinic in Sweden. Findings showed that these women's view of their relationships with others grew more valuable. Their self-confidence and experience of strength improved, and they regarded life as being more enriched. A change in their disposition towards becoming more fragile and low-spirited was experienced as a hardship by the women. An interesting finding was that the patients described the aetiology of the disease from several interacting perspectives, which also affected their ideas of how to achieve wellbeing and health. The findings support the view that changes of both benefit and harm are present in the experience of breast cancer.     

Breast cancer care: women's experience

Medical treatments for breast cancer are undergoing rapid change. Studies of the management of breast cancer have investigated the psychosocial consequences of the diagnosis as expressed by the patients themselves, but infrequently relate these women's views directly to improvements in health care systems. The following study explores the experience of 18 women recently diagnosed as having breast cancer. The findings illustrate to both clinicians and managers the importance of considering a number of dimensions relevant to the psychosocial care of patients and suggest areas where health care systems may be modified to address the psychosocial needs of women. The results demonstrate the positive impact patient views can have on the development of health care services.     

An interactive process model of psychosocial support needs for women living with breast cancer

Psychosocial support is acknowledged as an important aspect of the care and recovery process for women diagnosed with breast cancer. To develop an understanding of support needs, a series of focus groups were conducted with a total of 80 Australian women living with breast cancer. The psychosocial needs identified in discussion were summarised into four main categories, Organisation of Care, Sense of Control, Validation of Experience and Feeling of Reassurance. From these themes an interactive model of psychosocial support needs was developed. As a process model it demonstrates that the provision of effective support is, necessarily, an integrated, not a piecemeal, process. The categories of support are broad, and are made more inclusive through interactions with each other, providing room to accommodate individual needs and styles of adjustment. The model is not esoteric or complicated - it is an accessible overview of the process for both client and helper.     

Younger and older women's concerns about menopause after breast cancer

A number of treatments for breast cancer induce menopause. This study's aim was to explore women's perceptions and beliefs about menopausal symptoms and their management following breast cancer, and to compare younger and older women's experiences. Data were collected via semi-structured focus groups from women who had undergone treatment for breast cancer, and who were currently experiencing menopausal symptoms. Data were interpreted by way of simple inductive thematic analysis. The women experienced a range of menopausal symptoms that they were not prepared for and found difficult to manage. The central themes related to their lack of knowledge of how to manage menopausal symptoms, and the distress and helplessness that arose from this. Women who were diagnosed prior to 40 years of age reported additional menopausal issues than women who were older at diagnosis. The women in this study expressed a thirst for information related to menopause after breast cancer. The women identified that their needs with regard to menopause after breast cancer were not being met, either through their own lack of knowledge or via conflicting or absent support and management. The importance of enabling women to deal with menopausal symptoms was a central theme to emerge from the data.     

Supportive care of rural women with breast cancer in Tasmania, Australia: changing needs over time

Providing for patients' psychosocial needs is a potential means of minimising cancer morbidity. Needs assessments can guide responsive patient-centred care. A longitudinal survey of women with early breast cancer consulting a breast nurse in a primarily rural state of Australia was undertaken to measure unmet supportive care needs, identify changes in unmet needs across time and compare results with previous studies. Needs assessments were completed with the Supportive Care Needs Survey (SCNS) at 1 month (n = 74) and 3 months (n = 83) post-diagnosis. Access to services was also examined. High levels of psychological and health system and information needs were identified at 1 month post-diagnosis, but these decreased significantly at 3 months post-diagnosis. Sexuality domain needs increased significantly during the same time. Compared to a previous SCNS study of rural women with breast cancer, unmet supportive care needs in this study were significantly lower than previously reported, although assistance with energy levels (i.e. fatigue) continues to be an unmet need for women with breast cancer. Results suggest there have been positive cultural changes within healthcare systems, specifically in better informing patients and providing support. Although services appear to be more responsive to breast cancer patients, significant unmet needs still exist.     

Breast cancer-race,ethnicity, and survival: a literature review

A review of the literature on breast cancer was conducted to identify gaps in knowledge as it relates breast cancer risk, race, and survival. The discussion has been divided into three broad categories: (1) breast cancer basics and the relationships between risks, race, and survival; (2) influence of race and socioeconomic status on breast cancer morbidity and mortality; and (3) relationship between age and mammography screening. All of the cited studies reveal evidence of a linkage between race and breast cancer survival, however, the effects of socioeconomic factors and race needs to be examined. Results suggest that African-American women and lower income women need to be targeted for early detection. Many of the analyses among younger women (20–39 years) reported that very little disease occurrence in young black women was associated with the socioeconomic factors studied. Conclusions from all studies indicate that more aggressive screening and public education programs directed toward younger black women is warranted. The gaps in knowledge identified included the lack of an explanation of early onset breast cancer with high penetrance as well as an explanation of African-American women's resistance to self-examination and mammography screening and other barriers to diagnostic treatment. Future studies should also examine the link between familial breast cancer and genetic mutations.     

Mental health outcomes in older women with breast cancer: impact of perceived family support and adjustment

OBJECTIVES: (1) To examine the mental health of older women with breast cancer in relation to support provided by, and the adjustment of, significant others including partners, children, and other family members or friends and (2) to document how often physicians address the women's significant others and the helpfulness of doing so. METHODS: A cross-sectional survey of newly diagnosed breast cancer patients aged 55 years or older (n = 222) was conducted. RESULTS: Partners, and in many instances children and other family members or friends, provided support. Support from partners and adjustment of both partners and children independently predicted less depression and anxiety among the study participants. For racial/ethnic minorities, support from, and adjustment of, adult children assumed particular importance. Nonetheless, women reported that their physicians rarely asked their significant others how they were coping (15%) or referred them to a support group (3%), even though both behaviors were rated as extremely helpful. CONCLUSION: For older women with breast cancer, both partners and adult children were important sources of support and their adjustment affected the women's mental health. Support sources and their impact on women's mental health varied among racial/ethnic groups, suggesting the importance of culturally sensitive provision of care by clinicians.     

Gender differences in cancer carer psychological distress: an analysis of moderators and mediators

Women cancer carers report higher rates of distress than men; however, there is little understanding of the mechanisms underlying these gender differences. The aim of this study was to examine the potential mediating roles of burden of care, unmet needs, self-silencing, self-efficacy and optimism, and the potential moderating influence of social support, cancer stage, patient gender, time spent caring and other responsibilities, on gender differences in carer distress. Of 329 informal cancer carers (245 women, 119 men), women reported significantly more anxiety, burden of care and unmet needs than men. In the mediation analysis, gender differences in anxiety were fully explained by both the independent contribution and combination of: Disrupted Schedule, Health Problems and Emotional and Spiritual Unmet Needs. Women cared for both men and women patients, across a broad range of relationships, whereas men predominantly cared for their female partner. There was no gender difference in number of hours spent caring or in companionship, amount of support received, and additional responsibilities for children, housework or studies, and none of these factors acted as moderators of gender differences in anxiety. It is concluded that women's gendered role is associated with unmet needs and burden of care, resulting in greater anxiety.     

Psychologic issues, practitioners' interventions, and the relationship of both to an interdisciplinary breast center team

Over the past few decades there has been an ever increasing awareness of the need to address the psychosocial, psychologic, and sexual issues that can surface for women who face a diagnosis of breast cancer. The comprehensive breast center has shown itself to be one setting in which multidisciplinary teams can come together to work efficiently and compassionately in a coordinated fashion to support women holistically through the breast cancer experience. This article offers a review and addresses the juxtaposition of women's needs, practitioners' potential roles, and the preliminary knowledge to date showing comprehensive breast centers as one setting in which women's needs are best met.     

Mapping the quality of life and unmet needs of urban women with metastatic breast cancer

Enhancing quality of life and reducing the unmet needs of women are central to the successful management of advanced breast cancer. The objective of this study was to investigate the quality of life and support and information needs of urban women with advanced breast cancer. This study was conducted at four large urban hospitals in Melbourne, Australia. A consecutive sample of 105 women with advanced breast cancer completed a questionnaire that contained the European Organization of Research and Treatment of Cancer Quality of Life Q-C30 and the Supportive Care Needs Survey. Between one quarter and a third of the women reported difficulties with their physical, role and social functioning, and a little over a quarter of the women reported poor global health status. Fatigue was a problem for most women. The highest unmet needs were in the psychological and health information domains. Almost no differences in unmet needs were detected when comparing different demographic and disease characteristics of women. Health care providers should routinely monitor the quality of life and needs of women with advanced breast cancer to ensure that appropriate treatment, information or supportive services are made available.     

Quality of Life of Women with Breast Cancer and Socio-Demographic Factors

Background. Breast cancer treatment is an aggressive therapy that affects the deterioration of women’s quality of life (QOL) in many areas. Knowledge about factors that influence the assessment of the QOL is of particular importance. The aim of the study was to analyse areas of the quality of life of women with breast cancer, taking into account social and demographic factors. Methods: The research was carried included 324 women with breast cancer. The research was carried out using a diagnostic survey, the author’s questionnaire and a standardized questionnaire for measuring the QOL of women treated for breast cancer, ie the European Organization for Research and Treatment of Cancer, Quality of Life Questionnaire (EORTC) QLQ-C30 and QLQ-QLQ module BR23. Statistical analysis uses Statistica 10.0 software. The results were considered statistically significant when the calculated probability met the inequality of p     

Socioeconomic Factors Association with Knowledge and Practice of Breast Self-Examination among Iranian Women.

Background: Breast cancer is the leading type of cancer in women and is one of the most frequent cancers among Iranian women. Delay in diagnosis and treatment of breast cancer diminishes a women's chance of survival. Breast self- examination (BSE) may be effective in early detection. The purpose of this study was to identify the relationship between Iranian women's socioeconomic status and their knowledge and practice of BSE. Methods: Data were from a hospital-based case-control study among women diagnosed with breast cancer. Control subjects were matched to patients on age. 303 breast cancer patients and 303 control women were interviewed. Socioeconomic status and information including knowledge and practices of breast self examination and clinical breast examination were recorded and compared. Results: The mean +/- SD age of cases and controls was 48.2 +/- 9.8 and 50.2 +/- 11.1 (range 24-84 years), respectively. The study revealed that there were significant relationships between education level and knowledge and practices of breast self examination in both cases and controls, increase in usage being observed with the level of education (P<0.05). Conclusion: The findings suggest that the knowledge and practices of women toward breast cancer early detection are inadequate in women with a lower level of education. Mass media cancer education should promote widespread access to information about early detection behavior.     

Women's experience of breast conserving treatment for breast cancer

The implementation of the National Breast Screening Programme in the UK, and subsequent increase in early detection of small cancers, has facilitated breast conserving treatment for more women with a breast cancer diagnosis than ever before. While a substantial body of literature has evolved regarding psychosocial morbidity and support needs of women at diagnosis and during treatment, there are specific gaps in the current knowledge base. The purpose of this study was to describe the experiences of women who had breast conserving treatment for early breast cancer, focusing on issues related to diagnosis, surgery, and radiotherapy. The study was designed within the context of clinical audit, with a view to informing service development. Seventy-six women who had undergone breast conserving surgery within the last 3-12 months, completed a self-report questionnaire. Findings indicated that although the majority of women expressed satisfaction with their treatment overall, a number of specific areas require attention from healthcare professionals. Further research is required to validate these findings and to explore: potential implications of different referral routes; information and support needs preceding definitive diagnosis; particular needs of those women with ductal carcinoma in situ (DCIS) vs. invasive disease; 'end of treatment' and ongoing information and support needs.