Social Conflict 5: Changing Identities in Families and Social Groups
Synopsis: All women with ovarian cancer deserve to be treated as patients with a right to vulnerability and the care of others. At the same time, all patients also have complex social identities. They are mothers, daughters, sisters, friends, professionals, and neighbors. Women report many struggles between their new identities as patients and these other roles, with their families and support networks often struggling to understand the change. At the same time, putting family members before themselves may be a critical part of women’s identities and values, complicating their own evolution in the new patient role.
Patient voices: “When you deal with this in the long term, you may lose some people. You lose friends, you may lose family or your spouse. They get sick of you being sick. Some people just can’t stick by you. I have many family members and many friends who have stuck by me. But you do lose people some people. You have people who have been friends all your life and then all of a sudden, they’re not there anymore. They just can’t cope with it. And you say, ‘I cope with it every day. If you’re my friend and you can’t cope with it, I don’t need you.’”
Group analysis: Groups of caregivers and advocates confirmed what our patient groups had told us anecdotally — women feel enormous pressure to keep up their old social identities after they become ovarian cancer patients, sometimes to the detriment of their overall health. Rather than telling women how they ought to behave, our discussion groups proposed resources to help women map their relevant relationships and model how they will be impacted by the journey through ovarian cancer. These groups imagined scripts, videos, and interpersonal coaching to help patients initiate conversations they never thought they would be having.
Design principle: Any new resource for ovarian cancer patients must enable them to represent their desires within their families and social groups. These resources must respect all types of families and the many different kinds of relationships women may have in them. When appropriate, resources should also be created for spouses, children, etc. that help them become an effective part of the patient’s support network.