Quality-of-life concerns of African American breast cancer survivors within rural North Carolina: blending the techniques of photovoice and grounded theory

Social norms imposing a prevailing silence around breast cancer in rural African American communities have made it difficult for survivors to express their quality-of-life (QOL) concerns. In this article, the authors describe how they blended the photovoice method (providing participants with cameras so they can record, discuss, and relate the realities of their lives) with grounded theory techniques to assist 13 African American breast cancer survivors from rural eastern North Carolina in (a) exploring how they perceive and address their QOL within their own social context and (b) developing a conceptual framework of survivorship QOL. The framework that emerged reveals that three social forces (racism, stigmas regarding cancer, and cultural expectations of African American women) drive four QOL concerns (seeking safe sources of support, adjusting to the role of cancer survivor, feeling comfortable about the future, and serving as role models) and that survivors address these concerns by relying on spiritual faith and devising strategies to maintain social standing.     

Meeting the needs of rural breast cancer survivors: what still needs to be done?

As screening and treatment for breast cancer improve, learning about survivors' post-treatment needs becomes increasingly important. Focus groups (n = 23) were conducted with breast cancer survivors (n = 128) in rural Washington communities during a 5-month period in 1996 to explore ways to improve the lives of rural breast cancer survivors and to expand existing knowledge of breast cancer survivorship. Survivors reported positive and negative outcomes of their cancer experience. Results indicate that the needs of many women with breast cancer, particularly women diagnosed with late-stage disease, are not being met. Participants diagnosed with late-stage cancer were more likely than participants diagnosed with early-stage cancer to comment about being treated poorly by the medical system and to voice a need for increased support and educational services for breast cancer patients. Rural survivors, regardless of stage at diagnosis, reported needing more education about breast cancer and more emotional support after diagnosis. Further efforts to facilitate support and education within the context of medical care and to improve patient-clinician relationships are needed.     

A STUDY OF POSTDIAGNOSIS BREAST CANCER CONCERNS FOR WOMEN LIVING IN RURAL AND REMOTE QUEENSLAND. PART II: SUPPORT ISSUES

This paper presents the recent findings from a study on the postdiagnosis support needs of women with breast cancer living in rural and remote Queensland. The findings presented in this discussion focus on support needs from the perspective of the women experiencing breast cancer as well as health service providers. The tyranny of distance imposes unique hardships, such as separation from family and friends, during a time of great vulnerability for treatment, the need to travel long distances for support and follow-up services, and extra financial burdens, which can combine to cause strains on the marital relationship and family cohesion. Positive indications are, however, that the rural communities operate on strong, informal networks of support. This network of family, friends and community can, and does, play an active role in the provision of emotional and practical support.     

Counselling needs of women with a maternal history of breast cancer

Thirty-nine women with a maternal history of breast cancer were interviewed to determine their needs, concerns, and health practices pertaining to breast cancer. Each said they had been profoundly affected by their mother's illness. Many had feelings of guilt and anxiety, which had arisen after the diagnosis of their mother's breast cancer. Although most subjects (79%) practiced breast self-examination (BSE), both examiners and nonexaminers felt that their emotional reactions to breast cancer might keep them from performing an adequate examination. Subjects sought frequent breast examinations from a health professional--59% had two or more examinations a year--and found they helped to relieve anxiety. Most of the subjects (82%) though their risk of breast cancer was increased because of their maternal history of breast cancer. They were also concerned about the effects of birth control pills, radiation, and other factors on their breast cancer risk. Although subjects were concerned about risk, they had only vague, and sometimes incorrect, information about the magnitude of the risk. Based on these findings, we suggest that, beginning at the time of their mother's diagnosis, women whose mothers have breast cancer would benefit from ongoing counseling on emotional issues from a service that provides information and counselling about breast cancer risk, from receiving instruction in BSE and from having regularly scheduled examinations from a health care professional.     

YOUNG WOMEN'S HEALTH CONCERNS: REVEALING PARADOX

Because of the numerous physical, psychological, and social changes that take place for adolescents, the risk of engaging in life-threatening behavior is greater than at any other time in their life-span. Community workers identified the invisibility of adolescent women (ages 16–24) in their health-related programs and sought to rectify this. To discover the unmet health concerns of adolescent women, eight focus groups were held with a diverse group of adolescent women. Forty-two adolescent women, including adolescent mothers, women of color, attendees at a drop-in youth center, high school and university students, and employed persons participated. While most women attended one focus group, some participants attended two. Using Spradley's ethnographic method, we identified two overarching themes shared by the adolescent women. These themes included feeling invisible and struggling with independence. Our findings underscore the invisibility of adolescent women's lived experiences and concerns within most research agendas.     

Needs assessment of rural and remote women travelling to the city for breast cancer treatment

The purpose of this study was to assess the needs of rural women travelling to the city for breast cancer treatment. Participants included 80 women aged between 34 and 80 years living in rural NSW and South Australia who travelled for breast cancer treatment. After completing treatment, participants completed a brief telephone survey on the needs of rural women travelling for treatment. Findings revealed that more than 90% of women travelled for treatment due to the lack of available treatment centres closer to home and on average they spent 6.79 weeks (SD=4.73) away from their home and family. Findings also showed that 89% identified specific problems for rural women, with social and practical support being primary concerns. Although the majority of women were provided with some type of social support, only 39% of women received financial assistance and 19% of these women had trouble claiming money for which they were eligible. Recommendations of appropriate interventions to ensure equity in the availability and access to breast cancer treatment for all women are discussed.     

The psychosocial concerns and needs of women recently diagnosed with breast cancer: a qualitative study of patient,nurse and volunteer perspectives

Objective To qualitatively identify the concerns and needs of Australian women recently diagnosed with breast cancer. Background Breast cancer diagnosis can lead to impairment in multiple areas of psychosocial well‐being, including physical, social and emotional functioning. Research has therefore begun to focus on identifying and addressing survivors’ concerns and needs, with most research examining the time of treatment completion. However diagnosis and treatment are also key times of psychological need, and less is known about the psychosocial concerns and needs at these times. Research design Seven focus group interviews were conducted examining three categories of participants: (i) patients diagnosed with early‐stage breast cancer within the past 12 months, (ii) oncology nurses, and (iii) volunteers who work with cancer patients. Sampling was discontinued when informational redundancy was achieved. Setting and participants Thirty‐four participants took part in one of seven focus group meetings held in a hospital patient resource room. Results A wide variety of psychosocial concerns and needs were discussed, and five specific areas of concern were identified: (i) coping with side‐effects; (ii) dealing with self‐concept change; (iii) stress and adjustment reactions; (iv) having to manage others’ unhelpful beliefs, expectations and emotions; and (v) issues with survival and growth. There was a large degree of consistency in the concerns and needs identified by the different group categories. Conclusion In general, the concerns and needs expressed were consistent with survivorship issues previously identified in the literature; however, several new insights were obtained. Clinical implications of these findings are discussed.     

Rural Primary Care Providers’ Perceptions of Their Role in the Breast Cancer Care Continuum

Context: Rural women in the United States experience disparity in breast cancer diagnosis and treatment when compared to their urban counterparts. Given the 11% chance of lifetime occurrence of breast cancer for women overall, the continuum of breast cancer screening, diagnosis, treatment, and recovery are of legitimate concern to rural women and their primary care providers. Purpose: This analysis describes rural primary care providers’ perceptions of the full spectrum of breast cancer screening, treatment, and follow-up care for women patients, and it describes the providers’ desired role in the cancer care continuum. Method: Focus group interviews were conducted with primary care providers in 3 federally qualified community health centers serving a lower income, rural population. Focus group participants (N = 26) consisted of 11 physicians, 14 nurse practitioners, and 1 licensed clinical psychologist. Data were generated from audiotaped interviews transcribed verbatim and investigator field notes. Data were analyzed using constant comparison and findings were reviewed with a group of rural health professionals to judge the fit of findings with the emerging coding scheme. Findings: Provider relationships were characterized as being with women with cancer and comprised an active behind-the-scenes role in supporting their patients through treatment decisions and processes. Three themes emerged from the interview data: Knowing the Patient; Walking Through Treatment With the Patient; and Sending Them Off or Losing the Patient to the System. Conclusions: These findings should be a part of professional education for rural practitioners, and mechanisms to support this role should be implemented in practice settings.     

A qualitative analysis of reproductive issues raised by young Australian women with breast cancer

Available literature concentrates on infertility concerns of young women with breast cancer, while attention to psychosocial issues related to maintained or regained fertility is scarce. As part of a longitudinal, qualitative study of experiences of young women with breast cancer (diagnosed at 40 years or younger); (n = 13), concerns about fertility, contraception, pregnancy, and breastfeeding after breast cancer were expressed. Using semistructured, one-to-one interviews over three time phases, we explored these women's experiences. Perceptions of fertility changed over time. Contraception issues were raised together with recurrence fears related to pregnancy and breastfeeding after breast cancer. Decisions related to unplanned pregnancies and breastfeeding were described as particularly onerous.     

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.     

Physicians' and Women's Views on Hormone Therapy and Breast Cancer Risk After the WHI: A Qualitative Study

Background: The use of menopausal hormone therapy (HT) has significantly declined since the release of the Women's Health Initiative findings, but to what extent physicians' and women's concerns about breast cancer contributed to this change is unknown. Our study explored physicians' and women's beliefs about hormone therapy and breast cancer risk.

Methods: We conducted qualitative in-depth interviews with 22 primary care physicians and 45 female patients at two large integrated health care delivery systems in Washington State and Massachusetts.

Results: Concerns about breast cancer risk weighed into the decision-making process for physicians and women in initiating and continuing hormone therapy. For women, control of menopausal symptoms was important and possibly outweighed their concerns about the potential risks of breast cancer. Though concerned about its association with increasing breast cancer risk, physicians were willing to consider hormone therapy to manage women's menopausal symptoms but were frustrated about the lack of available non-hormone therapy alternatives. Most physicians and some women were aware of the Women's Health Initiative, and its findings appeared to influence their beliefs about hormone therapy and breast cancer risk, though doubts remained among both groups about the study findings and implications.

Conclusions: Our qualitative study suggests that after the Women's Health Initiative, concerns about breast cancer risk weighed into decisions to initiate and continue hormone therapy for both physicians and women, but menopausal symptoms often directed use.     

A Qualitative Analysis of Reproductive Issues Raised by Young Australian Women with Breast Cancer

Available literature concentrates on infertility concerns of young women with breast cancer, while attention to psychosocial issues related to maintained or regained fertility is scarce. As part of a longitudinal, qualitative study of experiences of young women with breast cancer (diagnosed at 40 years or younger); (n = 13), concerns about fertility, contraception, pregnancy, and breastfeeding after breast cancer were expressed. Using semistructured, one-to-one interviews over three time phases, we explored these women's experiences. Perceptions of fertility changed over time. Contraception issues were raised together with recurrence fears related to pregnancy and breastfeeding after breast cancer. Decisions related to unplanned pregnancies and breastfeeding were described as particularly onerous.     

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.     

Exploring breast cancer screening barriers among Barbadian women: a focus group study of mammography in a resource-constrained setting

Breast cancer affects women worldwide. Early detection strategies, notably mammography, aim to reduce mortality from breast cancer. However, mammography is a costly screening tool, generates controversy in terms of its impact and adverse effects, and its uptake remains low among some populations. This qualitative study (12 focus groups with 110 participants) explored experiences with mammography among Barbadian women by investigating how barriers are negotiated in a setting of resource-constrained health care provision without a national screening programme. The study findings indicate that, firstly, Barbadian women have to actively seek understanding of both breast cancer and the mammography process. Women described how, with little public awareness and knowledge, they borrow from available public health information on diabetes and HIV/AIDS to give meaning to mammographic screening. Secondly, many women expressed their fear about mammography and its potential consequences, such as experiencing social stigma and losing a romantic relationship after diagnosis. Thirdly, the cost of screening for women who opted for the more reliable private facilities was discussed, along with the potential cost of health care following a diagnosis and the emotional cost of enduring the societal taboo of breast cancer. If breast cancer screening is to be acceptable for this or similar populations, there should be provision of additional services to ensure better access to free screening or alternative strategies, as well as post-diagnostic social and financial support. The policies to develop these services must also address women’s concerns about screening and breast cancer, and provide comprehensive information to allow informed decisions about screening.     

Women's health: women's voices

This paper presents the results of an exploratory study into the health concerns of women in South Wales. The objective was to obtain information on the way in which women view their own health and the health issues that concern them. The research design replicated a study carried out in Canada by one of the authors. Sixty-five women were interviewed using a structured interview schedule. The core question on the interview schedule took respondents through a list of 68 health and social problems. They were asked to indicate whether they had been worried about or had experienced any of these problems in the previous 6 months. The results support the findings of the Canadian research that reproductive health is not central to women's health concerns. On the contrary, among the most frequently mentioned problems were tiredness, stress, headaches and arthritis. The most frequently mentioned social problem was worrying about money. Women linked their health concerns with other problems such as unemployment, problems combining child care and paid employment and worrying about money. These problems created stress and, in turn, stress either led directly to ill health or else helped to foster ‘unhealthy’ life styles. Women were aware of the possibly harmful effects on health of smoking or drinking, for example, but resorted to them in order to cope with their stressful lives. One of the main conclusions of the study is that it is essential to incorporate women's health concerns into the policy-making process. Women's main health concerns are related to the stressful nature of their lives and, particularly in South Wales, to poverty and unemployment. So-called unhealthy lifestyles are often a response to stress and enable women to cope. This needs to be taken into consideration by health promoters. Finally, more research is required into women's health concerns and their understanding of health and illness.     

A study of rural women's satisfaction with a breast cancer self-help network.

The impact of breast cancer on the emotional and social health of women and their families is an important issue for the cancer field. Nevertheless, many patients do not avail themselves of support programmes. In rural communities there is often a lack of services, which, for many, leads to a perception of 'being alone' in the struggle to become better. This paper reports an evaluation of a pilot project to facilitate a self-help peer support group network: an extensive provincial audio teleconferencing network for rural breast cancer survivors, established by the Telemedicine Centre of the Memorial University of Newfoundland. A satisfaction questionnaire was distributed to participants in the pilot programme. Responses suggested that they were very satisfied with the use of audio teleconferencing for the facilitation of a social support programme. The programme appeared to help bridge the isolation gap that rural women with breast cancer often experience. The results have implications for the provision of self-help social support services through audio teleconferencing, as well as for the quality of life and wellbeing of rural women.     

Reducing the digital divide for low-income women with breast cancer: a feasibility study of a population-based intervention

A fundamental challenge to helping underserved women and their families cope with breast cancer is providing them with easily accessible, reliable health care information and support. This is especially true for low-income families living in rural areas where resources are few and frequently distant as well as low-income families in urban areas where access to information and support can be complex and overwhelming. The Internet is one mechanism that has tremendous potential to help these families cope with breast cancer. This article describes a feasibility test of the potential for the National Cancer Institute's (NCI's) Cancer Information Service (CIS) to provide access to an Internet-based system that has been shown to improve quality of life for underserved breast cancer patients. The test was conducted in rural Wisconsin (low socioeconomic status [SES] Caucasian women) and in Detroit, Michigan (low SES African American women), and compares the effectiveness of several different dissemination strategies. Using these results we propose a model for how CIS telephone and partnership program services could efficiently disseminate such information and support systems. In doing so we believe that important steps can be taken to close the digital divide that separates low-income families from the resources they need to effectively face cancer. This is the first of two articles coming from this study. A companion article reports on an evaluation of the use and impact of this system on the women who were given access to it.     

Rural and urban South African women's awareness of cancers of the breast and cervix

Objective : The investigation sought to establish the awareness of breast and cervical cancers among women of African descent, in both rural and urban areas, especially considering the oppression and deprivation experienced by this group. Design : Two groups of randomly selected women in a rural ( n = 70) and urban ( n = 70) area were interviewed using a structured questionnaire assessing their knowledge and attitudes regarding breast and cervical cancer and screening options. Results : The age range of the sample was 21-59 years with a mean of 35.23 years. Almost one-fifth of the women had not heard of these cancers, and almost half were unaware of the breast self-examination technique. Over one-third did not know about tests for breast cancer and more than half were unaware of tests for cervical cancer. Generally lower awareness levels were found in older and rural women who were also significantly more inclined to consult traditional healers (than doctors) about lumps in their breast or abnormal cervical bleeding. Conclusion : The findings are of great concern and represent a significant challenge in post-apartheid South Africa. The need for vigorous health promotion programmes cannot be sufficiently emphasised, especially in view of the benefits of early detection and treatment. There also needs to be particular focus on rural women, considering the inadequate health care resources in their communities and the socio-economic hardships facing them. Women in these communities must be empowered with knowledge about their health and illness prevention options.     

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.     

Assessing the practical and psychosocial needs of rural women with early breast cancer in Australia

The purpose of the current study was to assess the practical and psychosocial needs of rural women with early breast cancer in Australia and recommend strategies to ensure equity in availability and access to cancer treatment for all women. A random sample of 204 rural women diagnosed with early breast cancer was recruited to participate in a telephone survey via state and territory cancer registries. Although the majority of women were satisfied with their provision of information overall, less than a third of participants were provided with specific information on assistance for rural women. Findings also revealed that only 47% of the women who had to travel for treatment received financial assistance, and 13% of these women had difficulty organizing or claiming financial assistance. Furthermore, only 10% of women found social workers to be a source of support.