"This is a kind of betrayal": a qualitative study of disability after breast cancer

We proposed to document the effect of arm morbidity and disability in 40 Canadian women who were 12-24 months post breast cancer surgery. We completed 40 qualitative interviews as one component of a multidisciplinary national longitudinal study of arm morbidity after breast cancer (n = 745) involving four research sites (Fredericton/Saint John, Montreal, Winnipeg, Surrey). During semi-structured interviews, participants who had reported arm morbidity and disability in earlier surveys were asked to discuss the effects of these conditions on everyday life. The interviewees reported making major adjustments to paid and unpaid work, which often involved the assistance of family members, thus demonstrating the effect of disability. Interview data resulted in the creation of a model that addresses arm morbidity and disability, and that holds implications for health care professionals. Based on the interview findings, we conclude that a robust measure of disability after breast cancer should be developed. In the absence of a validated measure of the effect of disability, evaluating qualitative responses to questions about everyday activities could provide the impetus for provision of physical therapy and emotional support.