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.     

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.     

Breast Cancer Information Behaviours and Needs among Singapore Women: A Qualitative Study

Background: There is growing evidence on cancer communication and its impact on cancer-related health outcomes; however, little is known about how women gain access to and use breast cancer information in the multi-ethnic Asian context. This paper aimed to explore the breast cancer information acquisition behaviours and needs among Singapore women who attended a community-based health organisation for mammography screening. Methods, design and setting: Qualitative data were collected through semi-structured interviews with 37 racially diverse, aged 50 and above women, who have received mammography screening within the past two years. The interviews were conducted at either the Singapore Cancer Society Clinic or participant’s home. Results: Although cancer information scanning was more prevalent than information seeking (91.9% vs. 62.2%), those who purposively seek information exhibited a higher knowledge level of breast cancer. The most commonly cited sources for information scanning were friends, television and family, and for information seeking were the Internet, pamphlets from a healthcare organisation/ public authority, and healthcare providers. Singapore women were well-informed about the benefits of mammogram; however, specific knowledge, such as modifiable risk factors, reasons for different screening options and the trade-off between harm and benefit, was still lacking which led to confusion about screening. Conclusion: Breast cancer health educational materials should provide clear and balanced information to give women a more accurate or realistic expectation about mammography screening. Study findings provide important implications for breast cancer education and programs to move beyond simply raising awareness and craft specific informative messages addressing the needs of the target group.     

Psychological distress in women at risk for hereditary breast cancer: the role of family communication and perceived social support

Background: Hereditary breast cancer has a profound impact on individual family members and on their mutual communication and interactions. The way at‐risk women cope with the threat of hereditary breast cancer may depend on the quality of family communication about hereditary breast cancer and on the perceived social support from family and friends. Objective: To examine the associations of family communication and social support with long‐term psychological distress in a group of women at risk for hereditary breast cancer, who opted either for regular breast surveillance or prophylactic surgery. Methods: The study cohort consisted of 222 women at risk for hereditary breast cancer, who previously participated in a study on the psychological consequences of either regular breast cancer surveillance or prophylactic surgery. General and breast cancer specific distress, hereditary cancer‐related family communication, perceived social support, and demographics were assessed. Results: Using structural equation modelling, we found that open communication about hereditary cancer within the family was associated with less general and breast cancer specific distress. In addition, perceived support from family and friends was indirectly associated with less general and breast cancer‐specific distress through open communication within the family. Discussion: These findings indicate that family communication and perceived social support from friends and family are of paramount importance in the long‐term adaptation to being at risk for hereditary breast cancer. Attention for these issues needs to be incorporated in the care of women at risk for hereditary breast cancer. Copyright © 2010 John Wiley & Sons, Ltd.     

Informing breast cancer patients about clinical trials: a randomized clinical trial of an educational booklet.

BACKGROUND: To evaluate the impact of an educational booklet on women's knowledge of and willingness to participate in a randomized clinical trial of treatment for breast cancer. MATERIALS AND METHODS: Women undergoing surgery for newly diagnosed early stage breast cancer were randomized to receive, or not, an information booklet explaining the need for and manner in which randomized trials are conducted. RESULTS: Eighty-three women with newly diagnosed early stage breast cancer completed a questionnaire assessing attitudes to random clinical trials (RCTs) and were randomized to receive usual information treatment options provided from their oncologist, or the educational booklet in addition to usual information from their oncologist (42 usual information, 41 booklet). Fewer women who received the clinical trials booklet (40% versus 47%) would consider participating in the hypothetical clinical trial (P = 0.6). Mean knowledge scores increased for both groups; moreover, women who did not receive the booklet showed similar improvements to women who received the booklet [mean difference 0.09, 95% confidence interval (CI) -0.66 to 0.83]. In a multivariate analysis women who would consider participating in the clinical trial were more anxious [odds ratio (OR) 5.9, P = 0.02] had involved lymph nodes (OR 5.8, P = 0.02) and were less influenced by negative aspects of clinical trials (OR 7.7, P = 0.0001). After adjustment for these variables women who received the educational booklet were significantly less likely to consider trial participation (OR 0.22, P = 0.05). CONCLUSIONS: Educating women about clinical trials in this manner appears ineffective in improving recruitment to RCTs. Women appear to be more influenced by their perception of risk than understanding. This finding has ethical implications for communication of information about RCTs.     

Self-efficacy, coping, and difficulties interacting with health care professionals among women living with breast cancer in rural communities

This study examined self-efficacy, coping, and social support in relation to difficulties interacting with physicians and nurses among women living with breast cancer. One hundred women living in rural, mountainous communities of northeastern California were recruited, with 89 providing complete data for this study. All women completed a battery of questionnaires that included the CARES--Medical Interaction Subscale and measures of self-efficacy, coping, satisfaction with social support, and demographic and medical characteristics. In a multiple regression analysis, difficulties interacting with medical professionals were found to be greater among women who were not married, who used more behavioral disengagement or less self-distraction to cope with breast cancer, and who reported less self-efficacy for affect regulation and for seeking and understanding medical information. Emotional venting and satisfaction with social support for dealing with cancer-related stress were not, however, significantly related to difficulties in interacting with the medical team. This model accounted for an adjusted value of 42% of the variance. Further research is needed to identify possible causal relationships related to these findings and to determine what interventions might be warranted to improve medical interactions for women with breast cancer living in rural areas.     

Healthy women from suspected hereditary breast and ovarian cancer families: the significant others in their lives

This paper investigates communication and interactions between healthy women from families with a history of breast/ovarian cancer and five statuses of significant others: (1) women friends; (2) sisters; (3) brothers; (4) male partners; and (5) children in order to better understand the way the family deals with cancer genetics risk information and the extent of social support available to its members. We conducted a research ethics committee reviewed exploratory, qualitative study at a major clinical and research cancer centre in the United Kingdom from January to June 2000. Twenty-one semi-structured, in-depth interviews were conducted using a purposive sample of women coming to the cancer genetics risk clinic for the first time, supplemented by 5 months of participant observation. On the whole, women friends consistently provided strong social support. Sisters were usually close, but communication about the breast/ovarian cancer in their family in some cases was quite limited and fraught with emotional overtones. Brothers were the most difficult to relate to regarding cancer in the family and seemed almost to exist in a different 'interrelational space'. The women claimed that their male partners were supportive, but with caveats. Mothers worried about how much information and at what age they should inform their children about the specifics of the family history of breast/ovarian cancer and tried to protect them when they were young. The women were very concerned about their daughters and granddaughters, but were far less concerned about the impact on their sons.     

Exploring the multidimensional benefits of breast cancer support groups

Utilizing a more representative sample than previous research, this study examines differences in breast cancer survivors' social, psychological, and physical quality of life by participation in breast cancer support groups. This research also explores whether all breast cancer survivors who participate in breast cancer support groups are benefiting equally. The sample includes 958 women of Eastern North Carolina (26% African American, 73% Caucasian) diagnosed with breast cancer who completed interviews concerning their experience with the disease, as well as their social, psychological, and physical well-being. Support group participation was found to have a significant positive affect on social and overall QOL; yet these affects on social QOL were found to be insignificant, and merely marginally significant concerning overall QOL when controlling for sociodemographics, other social support networks, and disease characteristics. Significant differences were found in the characteristics of participants and non-participants of breast cancer support groups and a number of these differences were found to have significant affects on QOL. These findings suggest that future research needs to investigate the relationships between participation in a breast cancer support group and measures of QOL while controlling for potential confounding factors.     

How should we discuss genetic testing with women newly diagnosed with breast cancer? Design and implementation of a randomized controlled trial of two models of delivering education about treatment-focused genetic testing to younger women newly diagnosed with breast cancer

ABSTRACT: BACKGROUND: Germline BRCA1 and BRCA2 mutation testing offered shortly after a breast cancer diagnosis to inform women's treatment choices - treatment-focused genetic testing 'TFGT' - has entered clinical practice in specialist centers and is likely to be soon commonplace in acute breast cancer management, especially for younger women. Yet the optimal way to deliver information about TFGT to younger women newly diagnosed with breast cancer is not known, particularly for those who were not suspected of having a hereditary breast cancer syndrome prior to their cancer diagnosis. Also, little is known about the behavioral and psychosocial impact or cost effectiveness of educating patients about TFGT. This trial aims to examine the impact and efficiency of two models of educating younger women newly diagnosed with breast cancer about genetic testing in order to provide evidence for a safe and effective future clinical pathway for this service. Design/Methods: In this non-inferiority randomized controlled trial, 140 women newly diagnosed with breast cancer (aged less than 50 years) are being recruited from nine cancer centers in Australia. Eligible women with either a significant family history of breast and/or ovarian cancer or with other high risk features suggestive of a mutation detection rate of > 10% are invited by their surgeon prior to mastectomy or radiotherapy. After completing the first questionnaire, participants are randomized to receive either: (a) an educational pamphlet about genetic testing (intervention) or (b) a genetic counseling appointment at a family cancer center (standard care). Each participant is offered genetic testing for germline BRCA mutations. Decision-related and psychosocial outcomes are assessed over 12 months and include decisional conflict (primary outcome); uptake of bilateral mastectomy and/or risk-reducing salpingo-oophorectomy; cancer-specific- and general distress; family involvement in decision making; and decision regret. A process-oriented retrospective online survey will examine health professionals' attitudes toward TFGT; a health economic analysis will determine the cost effectiveness of the intervention. DISCUSSION: This trial will provide crucial information about the impact, efficiency and cost effectiveness of an educational pamphlet designed to inform younger women newly diagnosed with breast cancer about genetic testing. Issues regarding implementation of the trial are discussed.     

Appraising the self-assessed support needs of Turkish women with breast cancer

The purposes of this study were to establish the range of needs of women with breast cancer and to examine how women's needs might form clusters that could provide the basis for developing a standardized scale of needs for use by local breast care nurses in the evaluation of care. The sample consisted of 143 women with breast cancer who were admitted to the outpatient and inpatient oncology clinics in a university hospital in Erzurum, Turkey. The data were collected by questionnaire, and included demographic characteristics and the self-assessed support needs of women with breast cancer. Statistical analyses have shown that the standardized scale of needs has statistically acceptable levels of reliability and validity. The women's support needs mostly clustered in Family and Friends (79%) and After Care (78.3%). The most frequently required support category was Family and Friend; however, the women were in need of support of all categories. In terms of age ranges, there are statistically significant differences in relation to Femininity and Body Image, and Family and Friends of the seven categories. Women experienced a high level of needs associated with a diagnosis of breast cancer. The results in this study should increase awareness among cancer care professionals about a range of psychosocial needs and may help them target particular patient groups for particular support interventions.     

Are patient assistance programmes able to meet the needs of New York City women with breast cancer? Women's perspectives

Women with breast cancer report needs that may interfere with their ability to obtain necessary treatments. High-quality community-based patient assistance programmes exist; however, their ability to identify and meet women's needs is unknown. We surveyed women with breast cancer attending such programmes to assess programmes' ability to identify and meet their needs. We surveyed 117 (42% minority) women utilizing nine programmes in the New York City area about expectations, needs and experiences. Ninety-two (89%) women wanted information, 102 (95%) psychosocial support and 15 (20%) practical assistance. Seventy-three per cent had all or most of their needs identified, and 74% had all or most of their needs met. Seventy per cent stated programmes met needs they were not previously aware they had. Needs identified and met were lower among minority women (57% vs. 84%; P  = 0.003), those with lower income (46% vs. 79%; P  = 0.02) and those in poor physical health (56% vs. 78%; P  = 0.04), independent of the type of need. High-quality community-based patient assistance programmes effectively identify and meet the needs of women with breast cancer but traditionally at-risk women appear less likely to have needs identified and met. Programmes should enhance the systemization and sensitivity of needs assessments to improve women's experience with cancer.     

Exploring the Multidimensional Benefits of Breast Cancer Support Groups

Abstract

Utilizing a more representative sample than previous research, this study examines differences in breast cancer survivors' social, psychological, and physical quality of life by participation in breast cancer support groups. This research also explores whether all breast cancer survivors who participate in breast cancer support groups are benefiting equally. The sample includes 958 women of Eastern North Carolina (26% African American, 73% Caucasian) diagnosed with breast cancer who completed interviews concerning their experience with the disease, as well as their social, psychological, and physical well-being. Support group participation was found to have a significant positive affect on social and overall QOL; yet these affects on social QOL were found to be insignificant, and merely marginally significant concerning overall QOL when controlling for sociodemographics, other social support networks, and disease characteristics. Significant differences were found in the characteristics of participants and non-participants of breast cancer support groups and a number of these differences were found to have significant affects on QOL. These findings suggest that future research needs to investigate the relationships between participation in a breast cancer support group and measures of QOL while controlling for potential confounding factors.     

Decisional Support throughout the Cancer Journey for Older Women Diagnosed with Early Stage Breast Cancer: A Single Institutional Study

To determine if older women with early stage breast cancer have sufficient decisional support during their breast cancer journey, a questionnaire-based study was conducted at the Sunnybrook Odette Cancer Centre, in Toronto, Ontario, Canada. Women with stages I and II breast cancer, ≥60 years, were contacted upon completion of their adjuvant treatment. A questionnaire was developed based on focus groups, the literature, and consultation with patients and a multidisciplinary team of experts. The questionnaire was divided into six domains as follows: (1) information support surrounding diagnosis, (2) impact of cancer diagnosis on the patient, (3) quality of interaction with healthcare team, (4) decisional support from the healthcare team, (5) additional information needs surrounding treatment decision, and (6) information support during radiation treatment. Ninety-two of 137 patients approached were included in the analysis. Ninety percent were?>?60 years at the time of diagnosis and 65 % had stage I invasive breast cancer. The majority of women received adequate decisional support during their cancer journey. Approximately 90 % of women indicated that they received a high level of support during their cancer diagnosis. We found no significant differences in overall decisional support based on age at diagnosis, education level, ethnicity, or the presence of co-morbidities. However, participants desired additional educational resources such as a worksheet, consultation summary, or workbook to assist in making a treatment decision. The majority of participants felt that they had sufficient support while making a treatment decision for breast cancer.     

The psychosocial needs of breast cancer survivors; a qualitative study of the shared and unique needs of younger versus older survivors

Due to improvements in medical treatment and survival following breast cancer, researchers have turned their attention to investigating the needs of breast cancer survivors. There is disagreement about the extent to which survivors continue to experience psychological morbidity after treatment ends. Whilst the majority of women adjust well to breast cancer, some may have continued psychosocial needs. Available research suggests that younger pre-menopausal women are at increased risk of psychological morbidity following breast cancer. The present study aimed to gather preliminary qualitative data on the psychosocial needs of breast cancer survivors and to identify the shared and unique needs of younger versus older survivors. A qualitative methodology was chosen as this was a relatively unexplored area of enquiry. Patients treated for early-stage breast cancer who had completed their hospital-based treatment 6-24 months prior to participation were recruited. Sampling was discontinued when informational redundancy was achieved. Eighteen telephone interviews were conducted. A wide variety of on-going psychosocial and information needs were reported by breast cancer survivors including support needs, psychological needs, practical needs, physical needs and information needs. Younger women reported more needs than their older counterparts. Several needs reported by younger women were directly related to being of younger age or pre-menopausal at the time of diagnosis. Clinical implications are discussed.     

Bilateral oophorectomy and breast cancer risk reduction among women with a family history

PURPOSE: We investigated whether removal of the ovaries is an appropriate risk reduction option for women at elevated risk of breast cancer based on family history of breast cancer. PATIENTS AND METHODS: This question was investigated among a group of 851 women less than age 60 who underwent bilateral oophorectomy between 1970 and 1994 for various reasons. Questionnaire information was collected from 680 (80%) and women were grouped into family risk categories. Reported occurrences of breast cancer were compared to expected rates based on the Gail model. RESULTS: The number of observed breast cancers among women in the cohort was lower than expected for all levels of familial risk, with women in the highest risk groups experiencing about half to one-fourth the number of cancers expected. The apparent protective effect of oophorectomy was stronger among women who were both premenopausal and less than age 50 at time of surgery. CONCLUSION: These data support oophorectomy as a valid breast cancer prevention option for women of all risk levels.     

Determination of Information and Support Needs of First Degree Relatives of Women with Breast Cancer

Background: Breast cancer is the most frequent type of cancer among women in the world and the mostcommon cause of deaths from cancer in females. In Turkey, breast cancer comes first in the list of the mostfrequent ten cancer types seen in women. As the incidence rate of breast cancer is high, many women havingbreast cancer in the family experience the breast cancer at secondhand. This study was carried out in an attemptto determine the information and support needs of women whose first-degree relatives have breast cancer andto what extent these needs are met. Methods: The research sample consisted of 156 women. Questionnaire Formand Information and Support Needs Questionnaires were used as the data collection tools. Results: Informationneed score averages (x̄:3.72±0.19) of women included in the research sampling were found to be higher than theirscore averages of support needs (x̄:3.24±0.41). Conclusion: Information needs which were indicated by womenas very important were related to treatment, symptoms of breast cancer and breast self examination (BSE), whilesupport needs which were indicated by women as very important were learning how to perform BSE, women’sanxiety for themselves and their relatives regarding breast cancer and having their breasts examined by a healthprofessional. It is recommended that nurses and other medical staff should give information to women whosefirst-degree relatives have breast cancer about the disease, its etiology, scanning, diagnosis, treatment optionsand protection as well as prevention.     

Health-Related Information Exchange Experiences of Jordanian Women at Breast Cancer Diagnosis

The aim of this study was to explore Jordanian women's experiences of information exchange following diagnosis of early stage breast cancer. A purposive sample of 28 women who had surgery for early stage breast cancer within 6 months prior to the interview and had treatment at three hospitals in Central and Northern Jordan was recruited for the study. Data were collected using semi-structured individual interviews focused on women's communication experiences at diagnosis and during cancer treatment. Interviews were audio taped, transcribed verbatim in Arabic, and analyzed using conventional content analysis. Three main themes associated with information exchange were revealed as follows: (1) knowledge about breast cancer and its treatment, (2) communication of cancer diagnosis and treatment, and (3) educating on treatment side effects. Misconceptions about breast cancer risk factors, consequences of breast cancer treatment, and breast cancer-related symptoms were common among participants. Women made important health-related decisions based on misconceptions. Physician's information giving, availability, and responses to women's questions varied by their level of education and the type and location of treatment facility. Informational exchange experiences vary among Jordanian women diagnosed with breast cancer and raise concern over opportunities offered these women to engage in informed decision making. Findings suggest a need for nurses to assess the information needs of Jordanian women newly diagnosed with breast cancer and provide education tailored to individual needs. There is also a need to develop Arabic educational materials and make these available for patients at treatment facilities in all regions of Jordan.     

Factors associated with decisions about clinical BRCA1/2 testing.

Testing for mutations in BRCA1 and BRCA2 can provide important information about breast and ovarian cancer risk to a small but identifiable subgroup of women. Women who test positive for a BRCA1/2 mutation can pursue more aggressive cancer surveillance and prevention regimens. Among families with known mutations, women who test negative may avoid unnecessary interventions. Currently, little is known about the factors associated with the use of clinical BRCA1/2 testing. The objective of this study was to determine the factors associated with decisions about clinical BRCA1/2 testing among women undergoing clinical BRCA1/2 counseling through a retrospective cohort study of women who participated in a university-based clinic offering breast cancer risk assessment, genetic counseling, and BRCA1/2 testing between January 1996 and April 1998. From the 251 eligible women who responded to a follow-up survey, 125 (50%) had undergone or were undergoing BRCA1/2 testing, 86 (34%) had decided not to undergo testing, and 40 (16%) were undecided about testing. After multivariate adjustment, we found that women who chose to undergo BRCA1/2 testing were more likely to have a known familial mutation [odds ratio (OR), 7.46; 95% confidence interval (CI), 0.97-62.16], more likely to be Ashkenazi Jewish (OR, 6.37; 95% CI, 2.68-15.12), more likely to want cancer risk information for family members (OR, 1.93; 95% CI, 0.99-4.14), more likely to want information about ovarian cancer risk (OR, 1.69; 95% CI, 1.18-3.69), and less likely to be concerned about insurance or job discrimination (OR, 0.45; 95% CI, 0.21-0.94). These associations were also found in the subgroup of women with a predicted probability of a BRCA1 mutation of 25%. Our study suggests that approximately half of eligible women choose to undergo clinical BRCA1/2 testing after participating in counseling. Women who have the highest risk of carrying a mutation, and thus the greatest probability of gaining some useful information from the test results, are most likely to undergo testing. Women who undergo testing are also more interested in ovarian cancer risk information and less concerned about job and insurance discrimination.     

Interaction of social support and psychological stress on anxiety and depressive symptoms in breast cancer patients

Purpose: The aim of the present study was to assess the association of psychological stress and social support with anxiety and depressive symptoms in Chinese newly diagnosed breast cancer patients. Methods: Four hundred and one patients with breast cancer were recruited. Their demographic characteristics, psychological stress and social support were determined with a structured questionnaire, and their anxiety and depressive symptoms were assessed with the Hospital Anxiety and Depression Scale. Results: Psychological stressors caused by breast cancer diagnosed originated from five major sources, as determined by factor analysis. These included “Worrying about health being harmed,” “Fear of decline of physical function,” “Fear of work being harmed,” “Worry about daily life and social relationship being restricted,” and “Fear of family being harmed.” Hierarchical linear regression analysis indicated that, after adjusting for gender, age, marital status, educational level, and duration of illness, solid social support can alleviate such symptoms. Conclusions: The results of this study suggest that there are strong associations between patients’ needs and psychological distress with newly diagnosed breast cancer. Social support might affect these associations in Chinese women with breast cancer.