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Young Australian women with breast cancer : perspectives of their illness experiences

By Shirley Elizabeth Connell

Abstract

Young women with breast cancer have been found to experience their disease more negatively and more intensely than their older counterparts. However 'young' is not uniformly defined within the literature. Studies have reported on a wide range of ages considered to be 'young', such as samples simply divided by menopausal status or other researcher-defined parameters. For the purpose of this study, young women with breast cancer were defined as those diagnosed at 40 years of age or younger. The overarching aim of the study was to explore the problems faced by this group of young women using qualitative methodology, guided by constructionist epistemology, and grounded in symbolic interactionism and social constructionism. The study was conducted longitudinally, with data collected three times over a 12-18 month period using one-to-one in-depth semi-structured interviews. Baseline data were collected in the first phase of the study (n=35). A sub-group of participants (n=13) were chosen to be followed twice more approximately six months apart, which made up the next two phases. Themes derived from the literature guided the first phase of the study, data collection and analysis. Data analysis was performed after each data collection phase, with findings informing the next phase/s of the study. Thematic and content analysis were utilized in regards to the analysis of the first phase of the study, providing a framework identifying the most pressing concerns, such as those centred around children and partners, emotional aspects and negative physical consequences of treatment. Interrelationships between these themes were apparent. Findings suggest that the emotional support needs of this group of young women remains a challenge. Basic analytical principles of data reduction, data display and drawing conclusions guided the following phases of the analysis. NUD*IST (N6) software was utilized to help undertake in-depth analysis of all follow-up data. The literature concentrates on infertility as a concern for young women with breast cancer, however the study found that fertility per se was a concern for this group of women. Issues of maintained and regained fertility were reported, i.e., concerns surrounding suitable, safe and reliable contraception, pregnancy and breastfeeding after breast cancer. Over time, perceptions of fertility changed. Decisions related to unplanned pregnancies and breastfeeding were particularly onerous. The study also provided other insights into the participants' lives. Body image is suggested to be of greater concern for younger women with breast cancer than their older counterparts. Perceptions of breast symbolism, societal and personal, were explored, as were perceptions of the external portrayal of their bodies. In addition, the participants reported how their experience of breast cancer differed from that of older women with breast cancer, e.g., to be and dress more sexually. Theories and notions of social constructionism and the social construction of the body helped explain the participants' experiences. The women were acutely aware of the sexual importance society placed on women's breasts. Social norms and expectations and cultural trends, that is the youth and beauty culture, were found to greatly influence the participants' perceptions and hence decisions made. Prosthesis use and breast reconstructive surgery were viewed as normalising efforts undertaken by participants to reduce stigma related to breast loss/disfigurement and to enhance body image. The findings from this study provide a greater understanding of the issues, concerns and experiences of young women with breast cancer and provide information that could be utilized in the redesign of educational/information resources to provide these women with relevant information. Currently available support services may also benefit from these findings as greater understanding of these women's experiences may facilitate and promote the provision of more age-appropriate support for young women with breast cancer diagnosed in the future

Topics: Breast cancer, Young women, Children, Partners, Support, Reproduction issues, Fertility/infertility after breast cancer, Contraception after breast cancer, Pregnancy after breast cancer, Breastfeeding after breast cancer, Breast symbolism, Generational differences, Body image, Social norms, Social expectations, Cultural trends, Qualitative, Longitudinal
Publisher: Queensland University of Technology
Year: 2005
OAI identifier: oai:eprints.qut.edu.au:16054

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