Study: Take your time, follow your heart: strategies for communication about family planning
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This study is about:
Strategies for communication about family planning following a positive test for a mutation.
Why is this study important?
Balancing health care choices for reducing risk of cancer with plans for a future family is challenging. Figuring out how to discuss these issues with partners and family is another added layer and is the focus of this study. Previvors are individuals who have an increased risk for cancer due to an or other genetic risk factor, who have not developed cancer. The many risk management decisions they face can be overwhelming. Risk-reducing strategies can include removal of breast tissue, ovaries and fallopian tubes; these approaches may affect family planning, particularly for younger previvors. These decisions affect not only the woman at risk but also her entire family. Little research or guidance exists about discussing family planning decisions when a woman has a positive
test. The purpose of this study by Emily Raushcer, PhD, and Marleah Dean, PhD, was to identify strategies that previvors with a mutation use to convey family planning information while managing cancer risk.
Previvors’ advice for communication about family planning centered on three common themes. They suggest that other previvors:
- maintain two-way communication with their partner.
- identify their gaps in knowledge and find credible sources of information.
- acknowledge complex emotional responses directly.
As one participant noted, “Take your time…and follow your heart.”
What does this mean for me?
This study reports useful strategies for talking about family planning decisions. Different strategies reflect a previvor’s family structure and dynamics. While not all approaches will work for everyone, the three common themes suggest that some approaches are broadly useful. Open and ongoing communication with partners and family members can increase support. Identifying credible sources of information and what information exists helps previvors communicate options to others. Acknowledging emotional responses helps previvors make decisions and feel more comfortable in those decisions. As one interviewee said: “I think you have to be loving and patient with yourself. I wanted to be okay and ready to talk about it right away, and I just wasn’t….just be really patient and loving with yourself, and know that in time it will get easier.”
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This article is relevant for:
Young high risk women
This article is also relevant for:
people with a genetic mutation linked to cancer risk
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IN-DEPTH REVIEW OF RESEARCH
Use of genetic testing to determine an individual’s risk of hereditary breast and ovarian cancer is increasing. Women with mutations in and have a significantly high risk of developing breast and ovarian cancer and these cancers tend to occur at younger ages than the general population. Because these mutations greatly increase a woman’s likelihood of developing one of these cancers, carriers need to decide whether to pursue prophylactic surgeries to reduce their risk.
Preventive strategies can include (removal of breast tissue) and/or prophylactic salpingo-oophorectomy (removal of the ovaries and ). These decisions impact family planning considerations. A woman’s decisions on family planning affect her spouse or partner, children, parents, and extended family. These family dynamics affect how women discuss genetic cancer risk, yet little guidance exists on how to communicate about family planning and what strategies to consider.
Researchers of this study wanted to know:
What strategies do women carrying a BRCA1/2 mutation use for communicating with her partner and extended family about family planning?
Population(s) looked at in the study:
In this thorough, well-designed study, researchers interviewed 20 women with a mutation who had not completed their family planning decisions. Participating women were over 18 (the age of participants ranged from 24-48 with a median age of 35.5 years) and had a committed life partner with whom they had already had at least one conversation about family planning. Researchers recruited previvors at the 2015 FORCE conference and later interviewed them by phone.
Previvors conveyed three common themes in their advice for discussing family planning.
- First, participants said that maintaining two-way communication with their partner was key. Tips include:
- Inform and educate your partner about the impacts of these decisions—this enhances your partner’s support and includes him/her in the decision-making process.
- Acknowledge your partner’s feelings. Remember that your partner is also affected by your cancer risk and decisions.
- Keep checking in with your partner.
- Recognize that your partner may not be comfortable talking about these issues, and may have less exposure to family members with cancer.
- Second, previvors indicated that identifying knowledge gaps and finding credible sources of information was important. Tips include:
- Identify gaps in current knowledge.
- Find credible sources of information (social networking, genetic counselors, health care providers, trusted online resources). Previvors pointed out that sources that provide good emotional support (e.g., particular family members) may or may not be as helpful for information.
- Understand your information needs. What new technologies and options are available?
- Third, previvors stated that directly acknowledging complex emotional responses helped them make decisions and feel more comfortable in those decisions. As one participant noted, “Take your time…and follow your heart.” Tips include:
- Seek professional support if needed.
- Take time in making decisions. It’s okay to change your mind.
- Figure out what is right for you. Take others opinions into consideration, but don’t let them guide your decisions.
As one participant urged: “I would say that when they started making decisions, whatever they felt was right is what’s right. It’s not what somebody tells them. It’s not what’s on a piece of paper. It’s not a statistic. If they feel in their heart it’s the right thing to do, then that’s what it is. Unfortunately, with that’s all you have to go on, wherever your heart leads you.”
Researchers interviewed a small set of previvors who carry a mutation and interview data alone is not generalizable. The researchers note that participants chose to be interviewed. These participants may be more open with family members in decision-making than other previvors. On average, interviewees were well-educated and relatively affluent Caucasian women, which also limits the generalizability of the study.
Many additional genes have been associated with increased risk for breast or ovarian cancer. Although women with other mutations were not included in the study, they may face similar medical challenges. The authors misstate that preventive strategies are not needed for other hereditary cancers such as . Because ovarian and uterine cancer are associated with , family planning considerations also impact these families. Further, men may carry a or other mutation which puts them and their children at increased risk for cancer. Men with mutations and their partners may also face medical decisions associated with family planning and risk of passing a mutation on to children.
Previvors advise women who test positive for a mutation to: a) engage in two-way dialogue with partners, b) seek information from reliable sources, and c) acknowledge the emotions around the decision-making process. As one previvor stated: “….it’s not an emergency. It feels like an emergency when you’re diagnosed….take your time….then follow your heart.”
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Rauscher EA and Dean M. ‘Take your Time, Then Follow your Heart’: Previvors’ Advice for Communicating about Family Planning After Testing Positive for a Genetic Variant.” Families, Systems and Health. 2017; 35(4):486-497.
FORCE receives funding from industry sponsors, including companies that manufacture cancer drugs, tests and devices. All XRAYS articles are written independently of any sponsor and are reviewed by members of our Scientific Advisory Board prior to publication to assure scientific integrity.
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FORCE offers many peer support programs for people with inherited mutations.
- Our Message Boards allow people to connect with others who share their situation. Once registered, you can post on the Diagnosed With Cancer board to connect with other people who have been diagnosed.
- Our Peer Navigation Program will match you with a volunteer who shares your mutation and situation.
- Our moderated, private Facebook group allows you to connect with other community members 24/7.
- Check out our virtual and in-person support meeting calendar.
- Join one of our Zoom community group meetings.