To Manage Health-related Uncertainty Turn to Your Healthcare Providers
by Marleah Dean Kruzel, PhD
January 28, 2017
I remember sitting in the room waiting for the results and just feeling really nauseous and scared and full of anxiety when she read off our results. She [the genetic counselor] started with my mom and told her that she was negative, but then she looked at my other sister, and I heard her say, “But that’s where the good news stops. You two both tested positive.” I remember at that moment like touching my breasts and a few tears streaming down my face like oh my gosh, what just happened.
In June 2013, Jennifer’s sister was diagnosed with breast cancer at the young age of 38-years old. Given her sister’s age, the oncologist recommended genetic counseling and testing to determine if the cause of the cancer was hereditary. Jennifer’s sister tested positive for the BRCA2 mutation. These genetic test results were shocking as there wasn’t a significant history of cancer in Jennifer’s family with the exception of a cousin on her mom’s side. Her sister’s positive genetic test results prompted Jennifer to also undergo genetic counseling and testing. And unfortunately, like her sister, she tested positive. This news plummeted Jennifer into a new world of genetic risk and hereditary cancer.
Jennifer (her pseudonym) is a 30-year-old, Caucasian BRCA2 previvor — an individual who is genetically predisposed to develop hereditary breast and ovarian cancer during her lifetime. Currently living in California, she is married and has three boys — an 11-year-old stepson and a 3 ½ and 1 ½.
Recent research of mine published in the journal Social Science & Medicine reveals — after testing positive for a BRCA genetic mutation — previvors “live in a constant state of uncertainty and wonder not if they might get cancer but when.” In other words, they experience medical and familial uncertainty.
Previvors experience medical uncertainty as they contemplate their unknown future, undergo cancer surveillance appointments, and worry about possible cancer identified during surveillance. Familial uncertainty involves previvors’ past cancer memories and concerns for motherhood. (You can read more about previvors’ sources of uncertainty here).
What if I don’t have as great of an outcome? I worried about whether or not my children were going to know how much I love them. If they were going to remember me if something terrible happened to me.
In my latest study published in Health Communication (the first 50 people to click on this title will be able to download my article for free!), my co-author and I examined the strategies previvors engage in to manage their medical and familial uncertainties.
To manage uncertainty, previvors including Jennifer, engage in four strategies: (1) seeking healthcare providers as informational sources, (2) seeking healthcare providers as partners for decision-making, (3) seeking healthcare providers for supportive communication, and (4) seeking healthcare providers for social support network referrals. Below I discuss each of these strategies using Jennifer’s story as an example.
Seeking Healthcare Providers as Informational Sources
To begin, the number one coping strategy for previvors was seeking healthcare providers as informational sources. Previvors desired healthcare providers who were knowledge about BRCA, provided lots of information, answered all of their questions, checked their understanding, and provided additional resources at the end of each appointment.
My coping mechanism was to just throw myself and do as much research as I could pick up…But my biggest issue was that I felt like all of the doctors that I talked to, with the exception of the breast specialist and the genetic counselor; they were not as informed as I would have liked them to have been. I would have loved it if they were truly more informed so that when someone comes in and they have this genetic predisposition for hereditary cancer they understood. It felt like, at times, that I was educating my doctors. I guess just having a little bit more knowledge and understanding about what would be better.
As Jennifer explains above, finding and interacting with healthcare providers who were knowledgeable about BRCA was essential to her ability to cope with her uncertainty. Unfortunately, it took her awhile but Jennifer kept searching until she found providers who fit this description.
Seeking Healthcare Providers as Partners for Decision-making
Previvors also sought healthcare providers who would serve as partners, not dictators, for decision-making. They wanted to interact with providers who not only asked for their decision-making preferences but also valued those preferences as well as respected and supported their health decisions.
There were so many possibilities and so many different outcomes and so many ways that my life could change drastically.
Here, Jennifer expresses her frustration when her healthcare providers would not give their own advice about the best health decisions given her BRCA status. She wanted healthcare providers who would listen closely to her personal and medical concerns, share their own expertise and perspective, and then assist her making the best decision for her situation.
Seeking Healthcare Providers for Support Communication
Yet previvors didn’t just seek healthcare providers as informational sources and decision-making partners but also for supportive communication. That is, previvors sought healthcare providers who would acknowledge and validate their emotions through actively listening and compassionate communication. Furthermore, they also desired providers who would try to understand their personal, family, and medical situations and focus on their overall emotional well-being not just their physical body.
I was just talking to my sister about a week or so ago that it comes and goes in peaks and valleys. It’s like I get these wings of emotion, and it’s not related to my cycle.
As Jennifer expresses here, she experienced significant emotional distress after testing positive for BRCA but also because her own health journey was linked to her sister’s battle against cancer. Thus, Jennifer needed healthcare providers who would help her cope with her negative emotions as well as make informed health decisions.
Seeking Healthcare Providers for Social Support Network Referrals
Last, previvors turned to their healthcare providers for social support network referrals when their uncertainty could not be managed by their healthcare providers’ information, decision-making support, or supportive communication. Social support network referrals encompassed in-person and online support groups (i.e., FORCE), informal social groups (i.e., Facebook), and clinical psychologists and therapists.
I really immediately felt connection when I found those websites, especially FORCE because you can read other people’s stories, which is so many people showing other women or going through what you’re going through, and then I stumbled upon the Young Previvors Facebook page, and all of a sudden, I remember telling my oldest sister. You have got to join this group because she was very honest…
Here, Jennifer emphasizes how social support networks helped her cope with testing positive for BRCA. She explained that healthcare providers need to refer previvors to social support resources such as FORCE and Bright Pink but also match up previvors with other previvors in order to connect and talk about similar health experiences.
In sum, while previvors’ medical and familial uncertainties may never be completely eliminated, interacting with healthcare providers who provide information, build partnerships, communicate in supportive ways, and offer social support referrals may assist previvors in manage their uncertainties. As a BRCA2-positive patient myself, I know these strategies have helped me. Perhaps they will help you too.
Acknowledgements: I would like to thank “Jennifer” and all the previvors who kindly shared their personal health stories with me. You have taught me so much. I hope the results of this research help you and other previvors.
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Dr. Marleah Dean Kruzel (PhD, Texas A&M University) is an Assistant Professor in Health Communication at the University of South Florida. She studies patient-provider and family communication about hereditary breast and ovarian cancer. A BRCA2-positive patient herself, Marleah is committed to translating her research into practice, which is why she volunteers for Facing Our Risk of Cancer Empowered (FORCE) and maintains a blog called “The Patient and The Professor.” For more information, visit her website:www.cancercommunicationresearch.com. You can also follow her Twitter.