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While it is often stated that “cancer is a family disease” (IOM, 2007), little attention has been paid to family issues in breast cancer survivors. Persistent fatigue affects about 40% of breast cancer survivors, compromising their quality of life (Meeske et al, 2007). Since fatigue affects the ability to perform family roles, breast cancer survivors suffering from fatigue after cancer treatment may experience family problems such as restricted communication and role confusion. The aim of this interdisciplinary qualitative study was to explore family aspects of fatigue in breast cancer survivors.
Methods
The data were gathered as part of a larger, mixed-method evaluation of a fatigue intervention clinical trial (IPOS, 2009). Qualitative data were gathered through observation of group sessions (field notes), and individual in-depth interviews with survivors. Summaries of family sessions with a social worker were also analyzed. The data were entered into the NVivo7 computer software and examined for coding consistency. Data relevant to family issues were analyzed by identifying and verifying themes. Grounded theory coding procedures were used (Charmaz, 2006; Corbin & Strauss, 2008). Validity was enhanced by triangulation, prolonged engagement, journaling, and member checking.
Results
Two major themes emerged in the analysis. The first theme, “Interpreting the meaning of the fatigue in the family context,” captures the difficulty families face in understanding fatigue. Some survivors and family members interpreted the fatigue to be “not real”, and felt that the survivor was being lazy. Others felt that the fatigue was an indication of a possible recurrance. Because the fatigue was unexpected, unpredictable and invisible, survivors were uncertain how to explain the fatigue and how to handle family reactions to it. The second theme, “Adapting to the inability to perform family roles” relects the survivor's efforts to mitígate the impact of fatigue on the family and included two sub-themes, . “adapting to the loss of important family roles” and “protecting the children”. Coping with post-treatment fatigue is problematic for survivors and their families because uncertainty about the meaning of the fatigue interferes with open family communication. This uncertainty also complicates adaptation to the inability to perform family roles, and interferes with the role shifts that indicate healthy family adaptation to illness. In families with young children, a desire to keep the fatigue from affecting the childrens' lives further complicates the family adaptation to fatigue. Our presentation uses case examples and quotations to illustrate these themes.
Conclusions and Implications
Post-treatment fatigue impacts breast cancer survivors and their families in that is difficult to interpret the meaning of the fatigue, and this further complicates open communication and adaptation to the inability to perform family roles. The study suggests that fatigue education is needed for both breast cancer survivors and their families. Social workers in cancer centers, hospitals and community-based survivorship programs may play a lead role in developing programs for breast cancer survivors with fatigue and their families to help them achieve a better understanding of fatigue, as well as open communication and appropriate role shifts when necessary.