Black boxes and information pathways: An actor-network theory approach to breast cancer survivorship care

Abstract

Many women diagnosed with breast cancer today can expect to live long after completing their treatment. This growing population of survivors encounters distinct post-treatment health and information needs. Existing survivorship care models take information as a given, black boxing it. I use Actor-Network Theory to examine how information actually works for women after they complete breast cancer treatment, and how it shapes their understanding of survivorship. I draw on in-depth interviews with breast cancer survivors (n = 82) and a wide range of providers (n = 84) in a medically underserved region of Southern California. Black boxes and information pathways convey experiential dimensions of cancer care; they are also metaphoric constructs. The black box metaphor refers to the cancer experience as a container; the pathways metaphor refers to a journey. Each of these metaphors expresses salient dimensions of the cancer experience and has implications for post-treatment survivorship. When healthcare information flows smoothly and invisibly, its pathways become black boxed. Black boxes can be helpful when they function effectively. But since black boxes conceal their inner workings, it is challenging to intervene when difficulties arise. I provide three examples of difficulties that complicate women's transition to post-treatment survivorship: (1) when survivors fail to recognize treatment-related late effects, (2) do not understand they have a terminal diagnosis, or (3) worry that their treatment accomplished nothing. Contextualized within survivorship scholarship, this study recommends opening black boxes to examine how information pathways could connect women differently to improve survivorship care.