Punjabi Immigrant Women’s Breast Cancer Stories

The breast cancer experiences of Punjabi immigrant women, who represent the most populace group of South Asians in Canada, need to be understood in order to inform culturally appropriate cancer services. The purpose of this qualitative study was to explore women’s stories of breast cancer in order to uncover how they made sense of their experiences. Interviews with twelve Punjabi immigrant women who had breast cancer within the last 8 years were available for this study. The four storylines that emerged from the ethnographic narrative analysis were: getting through a family crisis, dealing with just another health problem, living with never-ending fear and suffering, and learning a “lesson from God.” A minor theme, “being part of a close-knit family,” highlighted the family context as the most pronounced influence on the women’s experiences. These findings provide valuable insights into how women’s experiences of breast cancer were shaped by the intersections of culture, family, community, cancer treatments, and interactions with health care professionals.     

Breast cancer diagnosis: biographical disruption,emotional experiences and strategic management in Thai women with breast cancer

In this article we draw on Bury's theory of biographical disruption to discuss the meanings of, and emotional experiences related to, being diagnosed with breast cancer among southern Thai women. Qualitative methods, including in‐depth interviewing and drawing methods, were used to collect data from 20 women with breast cancer. The women perceived breast cancer to be a rhok raai; an evil or dread disease. They believed that breast cancer would lead to death. The disruption in their biography occurred when they detected abnormalities indicating breast cancer. The women's narratives revealed their chaotic lives upon this diagnosis and the news precipitated in them shock, fear, anxiety and loss of hope. Although they experienced chaos and disruption, the women cultivated strategies that helped them cope with their experiences by accepting their fate and adhering to Buddhist beliefs and practices. Through their narratives of biographical disruption, the women in our study offer healthcare providers knowledge that could lead to an appreciation of their needs and concerns. This knowledge is crucial for health professionals who wish to provide emotional support to women who have been diagnosed with breast cancer in Thailand and elsewhere.     

Breast cancer in two regimes: the impact of social movements on illness experience

This article uses the narrative of one woman, Clara Larson, to explore changes over time in the experiences of illness available to women diagnosed with breast cancer. To claim that different illness experiences become available at different times is simply to acknowledge that experiences of disease are shaped not only by the individual circumstances of disease sufferers and the particular character of their pathologies, but by culturally, spatially and historically specific regimes of practices. This article explores the impact of social movements on the regime of breast cancer and makes four contributions to the scholarship on illness experience. First, it offers the concept disease regime as a way of conceptualising the structural shaping of illness experience. Second, it demonstrates the value of incorporating social movements more thoroughly into the study of illness experience. Third, it proposes that social movements change illness experiences in two ways: (1) by changing the sufferer or her relationship to the regime's practices; and (2) by changing and expanding the regime's actual practices. And fourth, it demonstrates how gender and sexuality are constituted within disease regimes and are challenged by social movements. This article is informed by four years of ethnographic research conducted in the San Francisco Bay Area between 1994 and 1998, supplemented by historical research and more than 40 taped interviews and oral histories with current and former breast cancer patients, activists, educators, scientists, support group leaders and volunteers.     

Discourses of normality and difference: responses to diagnosis and treatment of gynaecological cancer of Australian women

By comparison to other cancers such as breast and lung cancer, women in Australia are relatively infrequently diagnosed with gynaecological cancers. Apart from cervical cancer, public health information on gynaecological cancer is limited, as are published stories from gynaecological cancer survivors in women's magazines. Our qualitative study investigated how women with gynaecological cancers develop an identity in relation to their illness, and examined the extent of, and reasons for, a sense of perceived difference. The study was conducted between 2001 and 2003 and included in-depth interviews with 52 women aged 27-80 years diagnosed with gynaecological cancer within the past 5 years. Our analysis illustrates how women draw on a wider cancer discourse to make sense of their own illness, which gave them a sense of commonality. However, some women, predominantly those who were diagnosed with cancer of the vulva or vagina, or who underwent particular uncommon or unfamiliar treatments such as brachytherapy, had difficulties situating their illness within the wider cancer discourse. This had implications for women when accessing social support.     

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.     

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.     

Overlooked and underutilized: the critical role of leisure interventions in facilitating social support throughout breast cancer treatment and recovery

Breast cancer is a life event experienced by many women and is one that impacts various aspects of a woman's life including her occupational and family roles. A social worker is often an important part of a woman's health care team following a breast cancer diagnosis as well as throughout treatment, providing assistance in helping women to cope with negative social psychological effects associated with the illness experience. The purpose of this article is to provide social workers with an opportunity to consider the utilization of empirically established interventions such as social support from the relatively unknown field of leisure science. Through semi-structured interviews with eight women, the role and meaning of leisure and social support in the lives of women with breast cancer were explored. The findings indicated these women experienced and perceived social support through leisure activities with friends and family during and following treatment and also through their volunteer work following treatment. The research can help social workers understand the potential role of leisure interventions in meeting the needs of women with breast cancer throughout their illness experience. Implications for social work education are also highlighted.     

The emotional journey of women experiencing a breast abnormality

Using grounded theory, a multidisciplinary study team compared the narratives of 30 women who had recently experienced a breast cancer scare. Even though 10 women received a benign diagnosis, all women reported a difficult time prediagnosis, characterized by an array of emotions and contemplation of the meaning of life. Diagnosis separated the two groups with emotional relief dominant for the benign group and intensification of emotions for the cancer group. For those diagnosed with cancer, three factors contributed to arriving at a point of acceptance about the diagnosis and treatment: (a) sustained coping mechanisms; (b) a belief system that shifted the meaning of the cancer experience; and (c) the ability to manage non-cancer-related stressful events. Implications include the need for tailored biopsychosocial treatments that focus on reducing stress, enhancing support systems, reframing beliefs about the illness, and providing the opportunity for the women to talk about their experiences.     

''Nothing fit me'': nationwide consultations with young women with breast cancer

OBJECTIVE: There exists little research about the experience of breast cancer for young women in Canada. To address this gap, the Canadian Breast Cancer Network (CBCN) and the Ontario Breast Cancer Community Research Initiative undertook a research project to explore the information and support experiences, needs and recommendations of geographically diverse Canadian young women with breast cancer. SETTING AND PARTICIPANTS: We consulted with 65 young women in 10 focus groups held across Canada. All women had been diagnosed with breast cancer at, or before, 45 years of age. During the consultations the women were asked to discuss their information and support experiences and needs, as well as resource recommendations related to their diagnosis, treatment and survivorship. MAIN RESULTS: The overarching theme, 'Nothing Fit Me', revealed that accessed information, support and programmes/services did not 'fit' or match the women's age or life stage. When we asked for their recommendations the young women suggested that information and support match their age and life stage and that health-care providers create and implement several topical workshops concerning, for example, sexuality, lymphedema and reconstruction. CONCLUSION: The findings will be used by the CBCN as a general platform from which to conduct further research and/or action strategies. The CBCN will also implement the recommendations from this groundbreaking work as this network formulates a national strategy for young women with breast cancer.     

How do tangible supports impact the breast cancer experience?

A woman's ability to navigate her new role as a breast cancer patient can be impacted by the support she has available to her during this time. One form of social support, tangible support, refers to providing support in a physical way that assists an individual in meeting their role responsibilities. The Roy Adaptation Model was used as a framework for conceptualizing the various roles in a woman's life that can be impacted by breast cancer and how the type and extent of tangible support impacts these roles. Through a qualitative open-ended interview 33 women with breast cancer described their experiences with their illness as it pertains to issues of role function and tangible supports.     

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.     

Perceived breast cancer risk: heuristic reasoning and search for a dominance structure

Studies suggest that people construct their risk perceptions by using inferential rules called heuristics. The purpose of this study was to identify heuristics that influence perceived breast cancer risk. We examined 11 interviews from women of diverse ethnic/cultural backgrounds who were recruited from community settings. Narratives in which women elaborated about their own breast cancer risk were analyzed with Argument and Heuristic Reasoning Analysis methodology, which is based on applied logic. The availability, simulation, representativeness, affect, and perceived control heuristics, and search for a dominance structure were commonly used for making risk assessments. Risk assessments were based on experiences with an abnormal breast symptom, experiences with affected family members and friends, beliefs about living a healthy lifestyle, and trust in health providers. Assessment of the potential threat of a breast symptom was facilitated by the search for a dominance structure. Experiences with family members and friends were incorporated into risk assessments through the availability, simulation, representativeness, and affect heuristics. Mistrust in health providers led to an inappropriate dependence on the perceived control heuristic. Identified heuristics appear to create predictable biases and suggest that perceived breast cancer risk is based on common cognitive patterns.     

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.     

Ethnic differences in types of social support from multiple sources after breast cancer surgery

Objectives. Diagnosis of and treatment for breast cancer (BCa) may require psychological adaptation and often involve heightened distress. Several types of social support positively relate to psychological adaptation to BCa, and negative support is associated with poorer adaptation. Although Hispanic women report greater distress than non-Hispanic White (NHW) women after diagnosis of BCa, no studies have examined ethnic differences in types of social support received from varying sources after surgery for BCa.

Design. Hispanic (N?=?61) and NHW (N?=?150) women diagnosed with early-stage BCa self-reported emotional, informational, instrumental, and negative support from five sources. Ethnic differences in levels of social support were compared using multiple regression analysis.

Results. When controlling for age, income, days since surgery, and stage of disease in multivariable models there were no ethnic differences in levels of emotional support from any source. Hispanic women reported greater informational support from adult women family members and children and male adult family members than did NHW women. Instrumental support from adult women family members was also greater among Hispanic than NHW women. Hispanic women reported higher negative support from husbands/partners and from children and male adult family members. When the number of years in the USA was controlled, Hispanic women showed greater informational support from adult women family members, children and male adult family members, and friends. Instrumental support from adult women family members remained greater in Hispanic women, but negative support no longer differed.

Conclusion. Family is a greater source of informational and instrumental support for Hispanic than NHW women. Hispanic women reported higher negative support from male sources than did NHW women. Level of support from different sources may also depend on time spent in the USA. Longitudinal studies are needed to determine whether patterns and sources of social support shift over the course of BCa treatment.     

Aggregation of ovarian cancer with breast, ovarian, colorectal, and prostate cancer in first-degree relatives

Epidemiologic studies have demonstrated a tendency for common cancers to aggregate in families. The authors investigated the effects of family history of cancer at multiple sites, including the breast, ovary, colorectum, and prostate, on ovarian cancer risk among 607 controls and 558 ovarian cases in Hawaii and Los Angeles, California, in 1993-1999. A family history of cancer of the breast, ovary, colorectum, or prostate in first-degree relatives was associated with an increased risk of ovarian cancer (odds ratio (OR)=1.7, 95% confidence interval (CI): 1.1, 2.6; OR=3.2, 95% CI: 1.3, 7.9; OR=1.5, 95% CI: 0.9, 2.5; and OR=1.6, 95% CI: 1.0, 2.8, respectively). A greater risk of ovarian cancer was observed for women with parents rather than siblings with a history of breast or prostate cancer and for women with parental colorectal cancer diagnosed at an early age, suggesting a genetic predisposition among these women. The risk of nonmucinous tumors, but not mucinous tumors, was positively associated with a family history of cancer. No significant interaction effects on risk existed between oral contraceptive pill use or pregnancy and family history of breast and/or ovarian cancer. Study findings suggest that ovarian cancer aggregates with several common cancers in family members.