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Young women’s experiences of biographical disruption: A longitudinal study of life with a BRCA mutation Rebekah Hamilton RN PHD Associate Professor Women, Children & Family Nursing Objectives • Describe longitudinal design and online interviewing • Identify major elements of biographical disruption for young women with a BRCA mutation • Summarize implications for nursing ©2009 Rush University Medical Center Design • Longitudinal design – 2 studies-all but 2 participants were between the ages of 18-39 years at the time of the first interview • First study in 2002-2003 – 5 participants – 3rd time they had been interviewed • Second study in 2005-2006 – 9 participants – 2nd time they had been interviewed Sample • An internally (CON) funded pilot study • 25 individuals were contacted by email on 4/19/11 – 13 had replied within one day with 12 agreeing to take part – Another 5 had replied within 1.5 months • 4 were interviewed – 2>39 yrs at first interview so not included in this analysis • 1 never returned consent Method • Interviewed on Skype – Sent webcams to 2 participants – Interview was audio recorded • Inductive thematic analysis – Focus today on “Biographical disruption” Biographical disruption • Bury (1982, p.169) defined biographical disruption as “a profound alteration and fundamental rethinking of a person’s biography and self-identity brought on by a disruptive event.” • In our project, the antecedent disruptive event to biographical disruption is not chronic illness but the knowledge that one has a disease-associated mutation and the subsequent experience of living with chronic genetic risk. Life has time limits • Where I’m at right now is trying to understand my plan. My plan has always been to get a degree, go to law school, get a job, get married, have kids. Perfect. The end. I want to have the preventative surgeries in my early thirties, and now my plan has somewhat of a time limit...Friends my age don’t understand that it’s not as easy as just going and “doing it” and being spontaneous and living freely. Yet there is no way anyone can understand what having a time limit on your life plan can feel like unless they’re in the situation. Change in plans • The biggest thing was probably as soon as I found out then that meant it’s too big, it’s too big. That we were not gonna’ have more children…As soon as I found that out, I already had the guilt. Potentially, for one, just couldn’t knowingly do it again. That was hard. I mean 25—I was not ready to be done by any stretch. My body is different • It just never goes away…It’s just there. My husband – we had our 18th wedding anniversary and he wants to do something great for our 25th, I’m crossing my fingers and I think that’s true for a lot of cancer survivors. Knowing that I didn’t just have a tumor and they cut it out and they poisoned and they did the whole thing but knowing that it’s just in my body, this recipe it does. It does. It can be hard then. Like a death sentence • I think if I allow myself to get there in my brain and in my heart I think there is a part of having something like this that feels like a death sentence. I don’t say that very often too many people. I can’t believe I just said it to you just now. There is definitely a part where I feel like even though I so far have survived breast cancer and I’ve done everything I can to limit my risk it is definitely a monkey that I carry around on my back…It just never goes away. Discussion • Biographical disruption as “a profound alteration and fundamental rethinking of a person’s biography and self-identity brought on by a disruptive event.” • Being diagnosed with a BRCA mutation is a “disruptive event” whether or not the young woman has a breast cancer diagnosis Implications for nurses • Awareness and sensitivity to the “bigger’ picture for this population…they always feel “at risk”. • Recognize the impact to be beyond the person with the mutation. • Passage of time is not necessarily reassuring as it may be for other women with breast cancer