Understanding Breast Cancer Survivorship Experience Among Mainland Chinese Women: a Mixed Methods Study

Background: With the increasing survival rate and length of survival in breast cancer, cancer survivorship has become an important chronic illness management issue. Previous studies in this area mainly focus on appraisal of quality of life (QOL). However, cancer survivorship studies should go beyond QOL to better understand breast cancer survivor's experience of living with the disease. Cancer survivorship appears as an emerging but complex concept incorporating dynamic, multidimensional, and socio-cultural perspectives. Little information exists addressing breast cancer survivorship experience in mainland China that impedes health professionals' ability to deliver quality of cancer care.;Aim: To develop an understanding of breast cancer survivorship experience from the perspective of mainland Chinese women. Specific objectives included exploring 1) women's perceived QOL; 2) factors associated with women's QOL; 3) women's perception of breast cancer survivorship experience; 4) the influence of socio-demographic and clinical characteristics on the women's perception of their survivorship experience after breast cancer; and 5) to develop a culturally relevant conceptual model to explain Chinese women's breast cancer survivorship experience.;Methods: A mixed methods study with two phases was conducted, quantitative approach (Phase One) followed by qualitative approach (Phase Two). Phase One was a cross-sectional survey on Chinese breast cancer survivors to investigate their QOL and its associating factors. Instruments included Quality of Life -- Cancer Survivor Scale and six-item Social Support Questionnaire. Findings in this phase contributed to inform the purposive sampling and develop a semi-structured interview schedule for Phase Two. In-depth interviews on selected survivors were conducted to explore their perceptions of cancer survivorship experience. Content analysis was used to analyze both latent and manifest meaning of interview data. Comparisons of qualitative data across defined groups were made to explore the influence of socio-demographic and clinical characteristics on breast cancer survivorship experience. Quantitative and qualitative data were compared and contrasted to identify and explore elements in cancer survivorship experience and model development.;Results: Among 100 survivors who completed Phase One, the mean age was 53.75 years (SD=7.27), and the median length of survivorship since completion of treatment was 44 months (IQR=23-61). The mean overall QOL was 6.55, with a range of 3.68 -8.89. The highest QOL was found in the physical subscale, and the lowest in the spiritual subscale. Multivariate regression analysis identified that length of survivorship, satisfaction with social support, annual household income were significantly associated with QOL.;Twenty-nine survivors completed Phase Two. Seven categories emerged describing the survivorship experience included experiencing distressful symptoms; struggling with uncertainty; alterations in femininity and sexuality; living with social stress; being cared for and supported; reflections and personal growth; and surviving and moving forward. Comparisons of qualitative data revealed that women with less than five years of survivorship, or low annual household income, or low perceived QOL tended to report negative survivorship experience. A conceptual model was developed by drawing the key findings of quantitative and qualitative phases to explain how Chinese women perceive the breast cancer survivorship experience. It reveals that breast cancer survivorship experience is multidimensional in nature, with a duality for the negative and positive aspects of life changes after completion of treatment, contributing to influence appraisal of QOL. Furthermore, breast cancer survivorship experience is not static but a dynamic coping process with several strategies for dealing with life changes that result from cancer.;Conclusions: The study provides evidence of several components of breast cancer survivorship within Chinese cultural context. This offers a comprehensive and insightful understanding of the experience after surviving breast cancer, and a basis for further inquiry for developing an instrument and culturally sensitive psychosocial intervention to address Chinese women's survivorship experience.