Social Conflict 4: Learning and Decision-making Preferences

Synopsis: All women with ovarian cancer deserve the opportunity to learn everything they would like to know about their disease — especially their individual case — and to make fully-informed decisions. But patients face many different sources of information, many of which were not designed with their interests in mind. Furthermore, patients and members of their support networks may all have their own styles of learning and making decisions; inflexible health systems often cannot adapt to a variety of individual preferences.

Patient voices“You can get caught up in it all. My husband had to ban me from the Internet. He knew me. Because you see the statistics, you see the stages, you know what stage you’re in, and then – you just freeze.”

“I shut down, mentally. I had three kids at home, and one of them was 11, and, you know, the thought that I wouldn't be there for a high school graduation, or a prom, or a -- it just was unfathomable to me. I just stopped. I just -- You know, I was on autopilot. And fortunately, my sister did all the reading, and she learned everything there was to know. And she made a lot of decisions for me, and walked me through it. Because unfortunately, you have to learn. You have to.”

Group analysis: Our patient discussion groups revealed a wide range of reactions and attitudes toward how much information patients need to absorb about their condition and how fast. However, there was an overall consensus around the idea of “self-advocacy” and “knowing your cancer.” Including nurses and other advocates in the conversation, however, revealed the limits of this paradigm — some patients will simply never be able to understand all the facts about their cancer, they said. The only responsible course is to give patients a choice among different learning and decision-making styles that take account of their individual needs. One point of consensus did emerge across all groups, however — to whatever extent possible, dynamic and interpersonal modes of learning are far more effective than more passive print or online resources.

Design principle: Any new resource for ovarian cancer patients must respect a broad range of learning and decision-making preferences. Any new resource should incorporate as much real, interpersonal interaction as possible.

<— Social Conflict 3: Treatment and Consent

Social Conflict 5: Changing Identities —>