Experiences of women with breast cancer: exchanging social support over the CHESS computer network

Using an existential-phenomenological approach, this paper describes how women with breast cancer experience the giving and receiving of social support in a computer-mediated context. Women viewed their experiences with the computer-mediated support group as an additional and unique source of support in facing their illness. Anonymity within the support group fostered equalized participation and allowed women to communicate in ways that would have been more difficult in a face-to-face context. The asynchronous communication was a frustration to some participants, but some indicated that the format allowed for more thoughtful interaction. Motivations for seeking social support appeared to be a dynamic process, with a consistent progression from a position of receiving support to that of giving support. The primary benefits women received from participation in the group were communicating with other people who shared similar problems and helping others, which allowed them to change their focus from a preoccupation with their own sickness to thinking of others. Consistent with past research is the finding that women in this study expressed that social support is a multidimensional phenomenon and that their computer-mediated support group provided abundant emotional support, encouragement, and informational support. Excerpts from the phenomenological interviews are used to review and highlight key theoretical concepts from the research literatures on computer-mediated communication, social support, and the psychosocial needs of women with breast cancer.     

Evaluation of support groups for women with breast cancer: importance of the navigator role

Background  

At least some forms of breast cancer are increasingly being viewed as a chronic illness, where an emphasis is placed on meeting the various ongoing needs of people living with cancer, their families and other members of their social support networks. This commentary outlines some approaches to the evaluation of cancer-related support groups, with a particular emphasis on those designed to provide long-distance support, via the internet, for women with breast cancer.     

Family support of immigrant Punjabi women with breast cancer

Women with breast cancer have been found to rely heavily on family members for providing support during their illness experiences. There has been limited research on ethnocultural families' experiences of illness and how these families respond to a diagnosis of breast cancer. This study examined the experiences and responses of family members of immigrant Punjabi women diagnosed with breast cancer. Through interviews with 19 Punjabi women diagnosed with breast cancer and 18 family members, key practical and emotional support strategies were described. Recommendations for culturally appropriate, family-centered models of care are provided that acknowledge breast cancer as a family event.     

Experiences of rural women with breast cancer receiving social support via audioconferencing

We examined the process of social support for breast cancer survivors in rural Newfoundland and Labrador. The subjects were 11 participants in a social support programme that made use of audioconferencing. The core social psychological process by which women received social support consisted of four distinct but overlapping stages: getting connected to the network; finding a voice; connecting with others; and becoming empowered. The findings suggested that support groups facilitated via audioconferencing can transcend geographical distance and permit women living in rural areas to share experiences with each other and to learn from and teach each other. The use of telephone and audioconferencing technologies should be encouraged for the provision of information and support to people in rural settings, where such services may be especially beneficial.     

Cultural models of illness and recovery in breast cancer support groups

In an ethnographic study of breast cancer support groups for white women, the authors describe the cultural model of illness and recovery espoused by the groups and examine contested areas that might influence participation. Through analysis of interviews, observation at meetings, and program documents, they develop a model of group culture that includes five components: recovery narrative, group metaphors, perceived benefits, group processes, and contested domains. The recovery narrative focuses on optimism and personal growth, and members invoke metaphors of family and sisterhood to describe their relationship to the group. Linkages are made between perceived benefits and group processes. Contested domains challenge dominant features of the recovery narrative. The authors discuss the value of cultural studies of illness support groups for understanding member-group fit.     

Participating in a support group: experience lived by women with breast cancer

The goal of the study was to understand the meaning of support groups in the life of women with breast cancer. It is a qualitative study with 30 mastectomized women who belonged to six support groups in the city of Fortaleza, Ceará. Data were collected with semi-structured interviews, organized and analyzed based on the interactionism concept. The results characterized the support groups as a mechanism to cope with the situation and to overcome the suffering derived from the diagnosis and treatment of the breast carcinoma. The socialization of the experiences facilitated the search for assistance in the support groups, since sharing the problems with mastectomized women was a way to preserve a high self-esteem, have faith and overcome some difficulties. Participating in the group provided well-being and a differentiated care, since it was considered a way to know, accept and understand the disease and its cure, facilitating the socialization of ideas.     

Effects of breast cancer and mastectomy on emotional support and adjustment

Wortman and Dunkel-Schetter (J. Soc. Issues 35, 120-155, 1979) have argued that victims of misfortune are likely to experience reduced social support at a time when support is needed most. The resulting self-doubt and isolation are thought to increase the victims' distress. Hypotheses derived from their analysis were tested by administering social and emotional adjustment inventories to 301 women who had undergone a mastectomy as treatment for breast cancer, and to 100 women diagnosed as having benign breast lumps (no-cancer, no-mastectomy controls). As expected, perceived emotional support was positively correlated with adjustment. However, contrary to Wortman and Dunkel-Schetter's analysis, the cancer patients perceived greater emotional support from friends and family than did the controls. In addition, these cancer 'victims' were no more socially or emotionally maladjusted than women without cancer.     

Effects of a telephone counseling intervention on sisters of young women with breast cancer

OBJECTIVE: Women that have a first-degree relative diagnosed with breast cancer at an early age are at increased risk of the disease, yet they often lack information about their personal risk of breast cancer and early detection measures. An intervention to provide objective risk information, reduce worries, and promote screening and healthy behaviors was developed. METHOD: In 1999-2002, a randomized pre-post design was used to test a tailored telephone counseling intervention with a sample of 163 women whose sisters were diagnosed with breast cancer at age 50 or younger in the San Francisco Bay Area. Participants were interviewed by telephone regarding their breast cancer risk factors, perceived risk, worries, lifestyle factors, and screening behavior. A modified Gail model was used to compute an objective measure of individualized lifetime risk. RESULTS: Risk overestimates averaged 25 percentage points. The intervention was effective in reducing overestimates in women age 50 and over but not in those under 50. The intervention was effective in increasing physical activity and reinforcing the conviction to maintain good breast health, but not in decreasing worries or increasing screening. CONCLUSION: Telephone counseling appears to be a viable tool for reducing risk overestimates and promoting healthy behaviors among sisters of women with breast cancer.     

治疗及支持系统对罹患乳腺癌患者术后抑郁的影响

摘要:目的　探讨女性乳腺癌患者术后抑郁的发生状况及治疗及支持系统对抑郁的影响。方法　选取唐山市三级甲等医院就诊的 337例女性乳腺癌术后患者进行问卷调查。结果　女性乳腺癌患者术后抑郁患病率为38.58%,多重回归分析显示,放疗与否、内分泌治疗与否、疤痕疼痛与否及社会支持水平与乳腺癌患者术后抑郁相关,（P＜0.05）。结论　乳腺癌术后抑郁的患病率较高,应提高社会支持度,降低乳腺癌术后抑郁的发生。     

Families affected by childhood cancer: an analysis of the provision of social support within online support groups

Background With increasing access to the Internet, there are new opportunities available to families to seek information, advice and support about childhood cancer online. Methods A total of 487 messages were retrieved from three childhood cancer online support groups and were analysed using deductive thematic analysis for the presence of support-intended communication using Cutrona and Suhr's social support typology. In addition, the messages were examined for negative experiences or disadvantages. Results The results revealed the presence of five types of social support: emotional, informational, esteem support and tangible assistance. In addition, some potential limitations of online support were identified, including a lack of responses and difficulties in maintaining relationships outside the online group context. Conclusion This study suggests that online support groups may offer the potential to support family members of children with cancer. In particular, it may be a useful resource for those seeking emotional and information support. However, there may be limitations associated with the use of online support groups.     

Information and support for women following the primary treatment of breast cancer

Objective To examine the need for, use of and satisfaction with information and support following primary treatment of breast cancer. Design Cross‐sectional survey. Participants Cohort of 266 surviving women diagnosed with breast cancer over a 25‐month period at a tertiary hospital, Adelaide, Australia. Time since diagnosis ranged from 6 to 30 months. Main outcome measures Need for, use of and satisfaction with information and support. Results Women reported high levels of need for information about a variety of issues following breast cancer treatment. Ninety‐four percentage reported a high level of need for information about one or more issues, particularly recognizing a recurrence, chances of cure and risk to family members of breast cancer. However, few women (2–32%) reported receiving such information. The most frequently used source of information was the surgeon followed by television, newspapers and books. The most frequently used source of support was family followed by friends and the surgeon. Few women (<7%) used formal support services or the Internet. Women were very satisfied with the information and support that they received from the surgeon and other health professionals but reported receiving decreasing amounts of information and support from them over time. Conclusions Women experience a high need for information about breast cancer related issues following primary treatment of breast cancer. These needs remain largely unmet as few women receive information about issues that concern them. The role of the surgeon and other health professionals is critical in narrowing the gap between needing and receiving information.     

Sources of support and the physical and mental well-being of young women with breast cancer.

Women following the stress resulting from the diagnosis and treatment for breast cancer draw resources from their network of friends and relatives. These resources include both emotional support and instrumental resources such as getting a ride to a medical appointment. Emotional support buffers the effects of the stresses they face and improves their mental well-being while the existence, rather than the use, of instrumental supports is positively related to physical well-being. These hypotheses are tested on a population-based cohort of 336 women in the United States, diagnosed and treated for breast cancer when aged 50 or less. Most are married (65%), work (75%), have dependent children (63%), are white (70%), and had a mastectomy (51%). Results of the multi-variate analyses indicate that consistent with predictions, controlling for socio-demographic and treatment-related variables, the size of the social network was related to greater emotional and instrumental support, and greater emotional support was related to better mental well-being. Contrary to predictions, greater use of instrumental resources was related to poorer physical well-being. The results indicate the importance of social resources on well-being following life-threatening illness.     

Effects of social relationships on survival for women with breast cancer: a prospective study

In this study we examine the relationship between a woman's social contexts at the time of diagnosis and her chances of having survived breast cancer four years later. A cohort of 133 women were followed prospectively after initial diagnosis and treatment and data were obtained from a questionnaire mailed soon after diagnosis and from hospital charts. Using multivariate methods to examine predictors of survival, two clinical factors, pathologic nodal status and clinical stage of disease, were significantly associated with survival. In addition we found significant and independent effects on survival of: number of supportive friends, number of supportive persons, whether the woman worked, whether she was unmarried, the extent of contact with friends and the size of her social network. Thus, the woman's social context, particularly contexts of friendship and work outside the home, are statistically important for survival. Using existing literature, further data analyses and interviews with some survivors, we speculate on the ways in which social contexts may influence survival and suggest research methods suitable to this question.     

Effects of breast cancer risk counseling for sexual minority women

Sexual minority women (lesbian and bisexual) represent a vulnerable group regarding their breast health. The participants in this study were 150 women aged 18-74 recruited via public announcements in mainstream and sexual minority communities in the greater Seattle metropolitan area. Potential participants were recruited to participate in a randomized trial of a breast cancer risk counseling intervention for sexual minority women. The counseling intervention produced significant reductions in perceived risk of breast cancer, anxieties and fears about breast cancer at 6 and 24 months, and increases in breast screening rates at 24 months in the intervention arm, compared with the control arm participants. These data add to the growing body of knowledge on sexual minority women's health and point to areas of community action and future research.     

Hip fractures in women with breast cancer

The authors investigated whether the incidence of first hip fracture, an indicator of osteoporosis, is lower in breast cancer patients, who are assumed to have higher levels of endogenous estrogens, than in other women. A population-based Swedish cohort comprising 9,673 women with invasive breast cancer diagnosed from 1958 through 1983 was followed up with respect to the occurrence of a first hip fracture during the period 1965-1983. Overall, the number of observed acute fractures (n = 387) was slightly higher than expected (n = 348.6) (standardized incidence ratio (SIR) = 1.1, 95% confidence interval (CI) 1.0-1.2). Risk for trochanteric fractures was slightly higher than expected (SIR = 1.2, 95% CI 1.0-1.4), but risk for cervical fractures was not (SIR = 1.0, 95% CI 0.9-1.1). Risk for trochanteric fracture decreased with increasing age at breast cancer diagnosis, reaching standardized incidence ratios close to unity after the age of 70 years. Duration of follow-up appeared to be unrelated to the risk of either type of fracture. The authors conclude that the incidence of first hip fracture is not lower in breast cancer patients than in other women.     

Attachment experiences in women with breast cancer

Research into relational experiences of cancer patients suggests possible links between attachment processes and cancer. Women with and without breast cancer were assessed regarding attachment history and early loss, closeness to parents, and adult attachment. Women with breast cancer reported significantly higher incidences of insecure histories and early loss, and scored significantly higher on avoidant attachment than women without cancer. The women in the cancer group also scored significantly lower on closeness to parents than women in the noncancer group. These findings are preliminary and indicate that more research is needed to understand the role that attachment may play in a multidimensional, biopsychosocial model of cancer.     

上海市长宁区乳腺癌患者相关知识、行为及需求调查

目的了解上海市长宁区乳腺癌患者相关知识、信念、行为及健康教育方式的需求现状,为开展社区随访干预提供参考依据。方法整群抽取长宁区4个街道女性乳腺癌患者并进行问卷调查。结果共调查254人,其中对部分知识点如“40岁以上妇女应每年做一次乳腺的临床和X线钼靶检查”、“乳腺癌与高脂饮食的关系”、乳腺癌的危险因素、有关症状体征等知晓率低于80％,且大部分知识为患病后获得;57．9％的患者对自己的疾病充满信心,并且能以积极的态度治疗疾病;82．7％的患者认为社区医生的随访是有用的,并且愿意接受康复照料;95％以上的患者能够定期复查和化疗并且遵守和执行医护人员的指导;仅有61．8％的患者经常自查体表肿瘤;对健康教育方式需求依次为医护讲解、病友交流、宣传资料和科普手册,分别占54．7％、47．2％、36．2％和28．7％;在干预渠道上,比例最高的是电视,占66．1％,在支持来源上,比例最高的是家人,占79．5％。结论应加强对高危妇女的防癌知识宣传教育,在随访中加强对可干预因素的控制,发挥人际传播和电视宣传等在乳腺癌相关防治知识的传播中的主渠道作用。     

A consultation with Canadian rural women with breast cancer

Objective Relatively little research has been carried out on the health and supportive care needs of rural women living with breast cancer. In this study, results from a Canadian focus group study are used to highlight issues of importance to rural women. Setting and participants A total of 276 rural women with breast cancer divided into 17 focus groups participated in the study conducted across Canada. A standardized protocol for discussion was employed. Issues of access to information, support and services were discussed, with women describing their experiences in trying to find appropriate programmes and services. Main results The major theme identified through analysis of qualitative data was ‘becoming aware of and/or gaining access to health care information, support and services.’ Other major themes included: (1) dealing with isolation; (2) having to travel; (3) feeling the financial burden and (4) coping with changing work. Conclusions Rural women with breast cancer have supportive care challenges related to their circumstances. A series of recommendations were generated through the consultation process which are contributing to the development of a national strategy focusing on the development and extension of programmes for rural women with breast cancer. Although the research on the project was not to specified standards, and suffered from less attention than community capacity building and advocacy, it proved to be of worth and revealed potential benefits from collaborations between researchers and community organizations.