Introduction: Encouraging family communication about possible genetic risk has become among the most important avenues for achieving the full potential of genomic discovery for primary and secondary prevention. Yet, effective family-wide risk communication (i.e., conveying genetic risk status and its meaning for other family members) remains a critical gap in the field. We aim to describe the iterative process of developing a scalable population-based communication outreach intervention, Your Family Connects, to reach ovarian cancer survivors and close relatives to communicate the potential for inherited risk and to consider genetic counseling. Methods: Relational-level theories (e.g., interdependence theory) suggest that interventions to promote family cancer risk communication will be most effective if they consider the qualities of specific relationships and activate motives to preserve the relationship. Informed by these theories, we collaborated with 14 citizen scientists (survivors of ovarian cancer or relatives) and collected 261 surveys and 39 structured interviews over 12 weeks of citizen science activities in 2020. Results: The citizen science findings and consideration of relational-level theories informed the content and implementation of Your Family Connects (<ext-link ext-link-type="uri" xlink:href="http://www.yourfamilyconnects.org/" xmlns:xlink="http://www.w3.org/1999/xlink">www.yourfamilyconnects.org</ext-link>). CS results showed survivors favor personal contact with close relatives, but relatives were open to alternative contact methods, such as through health professionals. Recognizing the need for varied approaches based on relationship dynamics, we implemented a relative contact menu to enable survivors identify at-risk relatives and provide multiple contact options (i.e., survivor contact, health professional contact, and delayed contact). In line with relational autonomy principles, we included pros and cons for each option, assisting survivors in choosing suitable contact methods for each relative. Discussion: Our developed intervention represents a novel application of relational-level theories and partnership with citizen scientists to expand genetic services reach to increase the likelihood for fair distribution of cancer genomic advances. The Your Family Connects intervention as part of a randomized trial in collaboration with the Georgia Cancer Registry compared with standard outreach.

Discoveries of genes associated with increased risk for common diseases (e.g., BRCA1/2 for breast and ovarian cancer) in the mid-1990s offered hope to families at high risk of carrying pathogenic variants. These discoveries heightened awareness that some cancers had a strong inheritable component and could affect an entire family. These also led to recommendations for risk-stratified screening recommendations (e.g., people at inherited risk to engage in more frequent screening) [1] and treatments (e.g., prophylactics and tumor-targeted treatments) [2] offering life-saving benefits.

In the context of ovarian cancer, approximately 15–20% of epithelial ovarian cancers are due to inherited mutations in cancer-predisposing genes [3]. As such, national guidelines indicate that individuals with a family history of ovarian cancer be referred for genetic counseling [1, 4, 5]. Patients identified with pathogenic variants are generally sent notification letters, and informational materials for specific relatives recommending that relatives seek genetic counseling [6, 7]. Despite these efforts, the majority of these relatives are unaware of their potential risk [8‒12]. The National Comprehensive Cancer Network® (NCCN) guideline now recommends that all individuals with a first- or second-degree blood relative diagnosed with ovarian cancer should be referred for genetic counseling [4]. Early identification of relatives who are potentially at risk for ovarian cancer and referral to genetic counseling could enable life-saving interventions [13].

Fostering family communication about risk has become among the most important avenues for achieving the full potential of genomic discovery in preemptive cancer detection and family health interventions. Yet, almost 30 years after these first discoveries, effective family-wide risk communication (i.e., conveying genetic risk status and its meaning for other family members) remains a critical gap in the field [14‒18].

Current interventions to assist with genetic risk communication for families at increased risk for hereditary cancers have been based largely on individual-level theories. These interventions typically have focused on the cognitive and emotional experiences (e.g., perceived risk, knowledge of pathogenic variants, worry about recurrence) of the individual who carries the pathogenic variant and how these factors influence their likelihood of notifying their at-risk relatives. These interventions have had little success in promoting genetic risk communication among high-risk families. A meta-analysis of 14 communication interventions to improve the number of relatives contacted for genetic services among families affected by hereditary cancer syndromes (e.g., BRCA-associated cancers, Lynch syndrome) showed statistically insignificant benefits [19].

Family systems theories can be useful in considering how to promote optimal family communication regarding the possibility of inherited risk [20‒22]. Families comprise complex social systems of interconnected members who influence one another’s behavior through interactions and communications. Few interventions have attempted to capitalize on family member roles and interactions to achieve appropriate family-wide risk communication [23]. Researchers have applied family systems theories to a variety of other health contexts including HIV-discordant couples [24], partners’ smoking cessation [25‒28], lung cancer patients’ family members who smoke [29], and mother-daughter pairs for sexually transmitted infections prevention [30]. However, surprisingly little research has applied this thinking to family communication regarding risk assessment such as family history (e.g., Koehly et al. [31]) or for people identified as high risk for hereditary breast and ovarian cancer (e.g., Peters et al. [32]).

Other interpersonal-level theories such as relational autonomy [33‒35] hold promise for increasing genetic risk communication amongst families. These theories would suggest that ovarian cancer survivors be encouraged to consider relational factors for each of their relatives in deciding how best to share risk communication. Relational theories such as relational autonomy [33‒35] and interdependence theory [36‒38] suggest that leveraging survivor-family interconnectedness to motivate communication could increase the effectiveness of risk communication interventions. Yet to date, these theories have received limited application.

Additionally, broadening genetic risk assessment beyond the clinical setting to public health contexts will require interventions that are low-touch and low-cost. State cancer registries provide an infrastructure and sustainable platform to deliver such outreach interventions [39]. State cancer registries can identify and contact all living patients with ovarian cancer (including high-grade ovarian, fallopian tube, and peritoneal cancers) along with contact information. Yet, to date, this approach to increase awareness of potential risk and make genetic counseling accessible has not been evaluated as a means to reach ovarian cancer survivors and close relatives.

With funding from the National Cancer Institute (NCI, 5U01CA240581-02) [13, 40] and in collaboration with the Georgia Cancer Registry (GCR), we aimed to develop a scalable message-based outreach intervention, Your Family Connects (YFC), to reach ovarian cancer survivors and close relatives (i.e., first- or second-degree relatives) to communicate the potential for inherited risk and consider genetic counseling options. In this manuscript, we describe the development process for the YFC intervention.

Using Relational Autonomy and Interdependence Theories as a Foundation

Two theories informed our intervention development process: relational autonomy [33‒35] and interdependence theory [36, 37]. As the guiding ethical principle of YFC, relational autonomy proposes that autonomy is best preserved by viewing individuals as situated within a dynamic and interdependent web of relationships. Relational autonomy theorists argue that privacy and confidentiality considerations unduly shape individualistic perspectives on family genetic risk communication. Thus, insufficient clinical emphasis is given to the rights of relatives to know their inherited risk [41, 42]. In this thinking, dyadic relationships with specific at-risk relatives influence the survivor’s motives for risk communication. Survivors may prefer either more or less direct communication based on the qualities of each relationship. Relational autonomy is best preserved when survivors have access to unbiased information about the value of risk communication for different family members, receive a menu of options for communicating with relatives, and receive the options without persuasion or manipulation.

Similarly, interdependence theory proposes that preserving relationships with important others is key to motivating health-enhancing behavior [36, 37]. An external health threat can be motivational to the extent that it galvanizes individuals within the family to adopt a relationship-focused “we-ness” thinking, that is, considering the threat as a shared problem with the shared responsibility to take actions to preserve the health of the relationship [37, 43, 44]. Individuals who are diagnosed with heritable cancer are motivated to inform family members about their risk to the extent that they perceive the health threat as a “we” threat. This “we-ness” can lead survivors to view the goals of health preservation and reducing negative health consequences as an important family responsibility to preserve and protect these relationships.

Two considerations constrained our intervention development process. First, targeted ovarian cancer survivors must be identified by the state registry. The GCR maintains the confidentiality of registry members and must be the “face” of any research outreach. Thus, the GCR must first reach out to eligible study participants using mailed recruitment materials. Second, we aimed to facilitate family genetic risk communication and encourage consideration of genetic counseling services for survivors and their first- and second-degree relatives. We chose to create a website because it enables convenient, 24-h access and represents a scalable approach for delivering health communication interventions [45, 46]. Thus, our intervention development activities focused on two key components: (1) a study invitation package mailed to potential participants from GCR, and (2) an interactive study website (www.yourfamilyconnects.org).

In considering these requirements, we drew from psychology theories of behavioral compliance. Our aim was to increase the likelihood that GCR-identified survivors of ovarian cancer would be intrigued enough to visit the website. We used the foot-in-the-door technique (FITD) [47], a social psychological method that suggests a stepped communication approach. FITD holds that people are more likely to agree to a large or more complex request (i.e., large ask) if they have complied with a smaller, easy-to-accomplish request (i.e., small ask) [47, 48]. Research has demonstrated that the FITD increases intention to be an organ donor [49], willingness to schedule a gynecological exam [50], and likelihood of calling a taxi after drinking in a bar [51]. To this end, we aimed to develop content to motivate ovarian cancer survivors to visit the study website (i.e., small ask), select an option for contacting first- or second-degree relatives (i.e., large ask), and consider genetic counseling.

Step 1: Citizen Science Data Collection Approach

We applied a citizen science (CS) approach to assist the research team in identifying content for the study recruitment and website. We describe the CS project elsewhere [52]. In brief, CS approaches involve nonprofessional research collaborators (henceforth, “citizens”) in research question development and refinement, data collection and analysis, and data interpretation [53]. We identified 11 ovarian cancer survivors and 3 relatives of survivors as CS collaborators via three networks: clinical connections made in partnership with community organizations, local and national cancer support organizations, and online ovarian cancer patient support groups. The CS collaborators were primarily white, two were African American, came from 9 states, and represented 6 foundations.

CS collaborators participated in orientation training and ongoing coaching sessions. Each collaborator was expected to collect at least 50 surveys and/or organize and conduct 2–3 structured interviews (online suppl. material A; for all online suppl. material, see https://doi.org/10.1159/000531772). CS collaborators assisted in the development of surveys and structured interviews. Each collaborator then engaged with their social and organizational ovarian cancer networks (e.g., personal peer support listservs and Facing Our Risk of Cancer Empowered [FORCE]) to recruit and collect data over a 12-week timeframe (Nov 2020- Jan 2021).

The conceptual rationale of CS tasks and domains/constructs of each task appear in Table 1. We engaged CS collaborators to distribute surveys and conduct structured interviews in accordance with each task. In Task 1, we asked for assistance in defining and operationalizing the small and large “asks” for participants to complete. Activities OF Tasks 2, 3, and 4 were grounded in relational autonomy and interdependence theory. Specifically, CS collaborators explored survivors’ preferences and attitudes about having their relatives contacted and in parallel, what relatives preferred for contact approaches (e.g., “contacting some relatives by survivors and someone with cancer expertise contacting others”). CS collaborators investigated the concerns raised by different types of contact. For Task 4, CS collaborators explored how communication about ovarian cancer risk flowed through the family, specifically, the barriers and facilitators to conversations about ovarian cancer risk. In Task 5, CS collaborators explored what survivors and relatives knew about genetic counseling and testing to identify information gaps that might inhibit uptake.

Table 1.

CS tasks, data collection approach, and conceptual rationale

Intervention goalCS data collectionTheory constructs
taskquantitative survey domainsqualitative interview constructs
Ovarian cancer survivors visit a website and consent to participate 1. Identify outreach steps to motivate survivors to visit the study website Assessed likelihood of agreeing to 10 study activities, (e.g., different study invitation strategies, 7 different “asks,” and trust in 5 different research organizations) Assessed aspects of survivor outreach perceived to be (un)favorable to someone in their position Foot in the door “small ask” 
Survivors enumerate at-risk relatives for outreach 2. Obtain survivor perspective on acceptability of contacting relatives Assessed survivors’ understanding of close relatives’ risk for ovarian cancer Assessed comfort with 7 relative outreach options, and agreement with 7 motives for sharing ovarian cancer risk information with relatives Explored aspects of how survivors/relatives communicated about shared cancer risk. Explored how survivors/relatives feel about communicating ovarian cancer risk information Foot in the door “large ask”Relational autonomy Interdependence theory 
 3. Obtain relative perspective on acceptability of approaches to being contacted Assessed comfort with 7 outreach options   
 4. Obtain both survivor and relative perspectives on risk information sharing If survivors: Assessed what risk information has been communicated and to whom in the familyAssessed agreement with 18 statements of attitudes toward discussing cancer risk; If not discussed, assessed agreement with 10 statements on reasons for not talking cancer risk with relatives Explored the content of conversations with family members about ovarian cancer risk to identify and address barriers to and facilitators for these conversations  
  If relatives: Assessed agreement with 11 statements of reasons for risk information being shared   
Survivors and at-risk relatives schedule genetic counseling sessions 5. Characterize survivors’ and relatives’ information needs related to genetic counseling Assessed reasons for personally having or not having genetic counseling and testing related to ovarian cancer (4 items; 11 items)Assess 10 statements of information needs related to genetic counseling and testing. Explored what survivors and relatives would want to know about genetic counseling and testing Interdependence theory 
Intervention goalCS data collectionTheory constructs
taskquantitative survey domainsqualitative interview constructs
Ovarian cancer survivors visit a website and consent to participate 1. Identify outreach steps to motivate survivors to visit the study website Assessed likelihood of agreeing to 10 study activities, (e.g., different study invitation strategies, 7 different “asks,” and trust in 5 different research organizations) Assessed aspects of survivor outreach perceived to be (un)favorable to someone in their position Foot in the door “small ask” 
Survivors enumerate at-risk relatives for outreach 2. Obtain survivor perspective on acceptability of contacting relatives Assessed survivors’ understanding of close relatives’ risk for ovarian cancer Assessed comfort with 7 relative outreach options, and agreement with 7 motives for sharing ovarian cancer risk information with relatives Explored aspects of how survivors/relatives communicated about shared cancer risk. Explored how survivors/relatives feel about communicating ovarian cancer risk information Foot in the door “large ask”Relational autonomy Interdependence theory 
 3. Obtain relative perspective on acceptability of approaches to being contacted Assessed comfort with 7 outreach options   
 4. Obtain both survivor and relative perspectives on risk information sharing If survivors: Assessed what risk information has been communicated and to whom in the familyAssessed agreement with 18 statements of attitudes toward discussing cancer risk; If not discussed, assessed agreement with 10 statements on reasons for not talking cancer risk with relatives Explored the content of conversations with family members about ovarian cancer risk to identify and address barriers to and facilitators for these conversations  
  If relatives: Assessed agreement with 11 statements of reasons for risk information being shared   
Survivors and at-risk relatives schedule genetic counseling sessions 5. Characterize survivors’ and relatives’ information needs related to genetic counseling Assessed reasons for personally having or not having genetic counseling and testing related to ovarian cancer (4 items; 11 items)Assess 10 statements of information needs related to genetic counseling and testing. Explored what survivors and relatives would want to know about genetic counseling and testing Interdependence theory 

Step 2: Synthesizing Data across Collection Strategies

The CS teams collected 261 surveys assessing survivors (n = 211) and at-risk relatives (n = 50) across five tasks [52]. CS collaborators also collected qualitative information via structured interviews (N = 39: 13 were completed for Task 1, 4 for Task 2, 7 for Task 3, 7 for Task 4, and 8 for Task 5) [52]. After Tasks 1–5 were completed, we conducted two panel discussions with CS collaborators to get their opinions and perspectives on the gaps in survey results and interview findings.

We cleaned all quantitative survey data for univariate descriptive analyses in SAS version 9.4. We analyzed the qualitative interviews in MaxQDA using a rapid analysis data approach [54‒56]. Briefly, research associates (JZ, GC) followed 2 iterative rounds of interview data review to extract information into themes and organize the themes into a summary table [54]. For example, we organized Task 1 interviews into 5 categories: (1) open a letter from the registry – facilitators, (2) open a letter from the registry – barriers, (3) visit the study website – facilitators, (4) visit the study website – barriers, and (5) motivational aspects of survivor identity.

Step 3: Intervention Development Process

The research team reviewed the summary table and identified key themes. Once we completed the initial analyses and coding, we reported our preliminary results to CS collaborators as part of the final CS project meeting. The debriefing ensured that survey and interview results were true to the meanings gleaned by the CS collaborators. To this end, we operationalized the small ask of YFC as visiting the YFC website (i.e., consent to participation and create a study log-in) and operationalized the large ask as enumerating their close relatives by at least first name and the blood relationship, then selecting a proper contact option for each enumerated relative.

An interdisciplinary team of experts in health communication (CM, JS, CE, YG, MK), genetics (CM, YG), and bioethics (RP) participated in intervention development activities. Together, the team came to a consensus on themes in the surveys and structured interviews and linked these to theory constructs (e.g., survivor small ask outreach) (shown in Fig. 1). In the mailed study recruitment package from GCR, intervention elements included: the envelope design and the customized invitation letter. On the YFC website, key elements included: a menu of contact options, the pros and cons of each option, and a family communication tip sheet.

Fig. 1.

Stepped behavioral objectives for the intervention.

Fig. 1.

Stepped behavioral objectives for the intervention.

Close modal

GCR Mailed Outreach Recruitment Materials and Strategies

Design of Recruitment Mailing

Several considerations influenced the external design of the envelope we used in our recruitment mailing. First, survivors reported that they would be motivated to open an envelope sent by trustworthy organizations (quote: I typically open them all and complete enclosed requests to those organizations that I’ve benefitted from [survivor, female]). In parallel, survey results indicated that survivors’ had high levels of trust in ovarian cancer information coming from a cancer research center (mean = 4.3; std = 0.71; range: 3–5; n = 81), a public health research institute (mean = 3.9; std = 0.83; range: 2–5; n = 80), or a state cancer registry (mean = 3.7; std = 0.95; range: 1–5; n = 79). In addition, survivors also rated they would be highly likely to open a letter from a state cancer registry (mean = 3.93; std = 1.08; range: 1–5; n = 85) and read it carefully (mean = 4.0; std = 0.95; range: 1–5; n = 85).

Second, survivors were clear that any mailed information must be distinguishable from junk mail. They further emphasized that the recruitment envelope must stand out from other mail to increase the likelihood that recipients would open it. To this end, survivors and relatives suggested that packaging include cancer themes such as use of the teal color, a unique identification to ovarian cancer. Relatedly, participants commonly mentioned feeling that ovarian cancer as a health topic was overshadowed by breast cancer (e.g., National Pink Ribbon campaigns) and the sense that a teal ribbon always caught their attention (quote: It would have to very specifically say ovarian cancer. If it said breast cancer, I would not open it because there’s so much of that out there that that’s something that I know in my mind, I would just sort through that and just say okay, whatever. Even though it’s in the family, I just wouldn’t be as tuned into it [relative, female]).

Third, survivors reported that privacy and confidentiality concerns would influence their decision to participate in a study. Many emphasized that the protection of privacy and personal health information must be assured (quote: whatever site that you put up that you have some assurances for whoever is going to be there that their information is for statistical purposes only that it isn’t gonna be shared anywhere. In this current environment, hopefully, you have some sort of a security where you’re able to keep that information safe [survivor, female]). To this end, several relatives even refused audio recording of their structured interview or canceled the interview even though a close relative was the interviewer. Relatedly, the GCR had an additional confidentiality requirement that the envelope could have no cancer-related label to identify the recipient as having had cancer.

We applied these three considerations to the design of the recruitment envelope (shown in Fig. 2). An example of the entire recruitment package appears in online supplementary material B. We used a catalog size (9″ × 12″) bright, teal-colored envelope to ideally distinguish the mailing from junk mail. The color teal is easily identifiable and relatable to survivors of ovarian cancer without an obvious cancer connection for the average person. The envelope included logos from Emory University and the Rollins School of Public Health. We also placed the GCR logo only on the letterhead inside the envelope. We printed “confidential” on the back of the envelope to emphasize the priority of the receiver’s privacy.

Fig. 2.

Matching small ask and CS results to mailed study invitation design.

Fig. 2.

Matching small ask and CS results to mailed study invitation design.

Close modal

Content of Recruitment Letter

We include a recruitment letter in the mailing asking the survivors to log onto the YFC website (described below). The survey responses of survivors guided the content of the letter. Survivor responses indicated that it was important to convey crucial information about the website, but that it was also critical how we presented that information in the recruitment letter.

Survivors felt it was important for letter recipients to understand what the YFC website offers. Most survivors indicated they would be likely to visit a website if it included the latest information on ovarian cancer (mean = 4.4; std = 0.80; range: 2–5; n = 84) and offered options for services for at-risk relatives (mean = 3.74; std = 1.16; range: 1–5; n = 85). Survivors also wanted assurance of the credibility of the website. Many survivors felt overwhelmed by the abundance of online information about BRCA 1/2. In the qualitative interviews, survivors noted that some ovarian cancer websites included questionable information that was incomplete and out-of-date (Quote: I think that most of the websites and the information and stuff that you find out there is very, very questionable. It’s either incomplete, out of date, or just flat-out wrong. I want the real data. I want the real story [relative, male]). Survivors indicated they would want a website that offers scientific facts endorsed by academic institutions, and direct guidance in cancer prevention actions.

In addition, survivors wanted a website with content relevant to their at-risk relatives (quote: I am very knowledgeable but if my relative wanted more information I would tell them to take a look at the website [survivor, female]). Some indicated that knowing the website was relevant to their close relatives would increase their likelihood of visiting the website.

Survivors also provided suggestions on how to present the information in the letter. They emphasized that the letter be concise and easy to read (quote: I do not like a lot of paper or too much information. I tend to throw that away…too much info, too much paper, too many details…I prefer short and to the point [survivor, female]). Some suggested adding a personal touch to the letter, such as addressing the letter using the receiver’s first name.

To this end, the short two-page recruitment letter informed survivors that the site included the latest information on ovarian cancer screening, how to identify relatives who could be at increased risk for ovarian cancer, and the offer of free genetic counseling sessions for them and their at-risk relatives. The letter also emphasized that the website was created in collaboration with families affected by ovarian cancer serving as “citizen scientists.” Again, the letter assured potential participants that their information would be confidential and would not be released to the study team until they gave consent on the website.

Consistent with relational theories and based on survivors’ survey responses, the recruitment letter explained that visiting the website to learn updated information about ovarian cancer risk could help their at-risk relatives and research related to ovarian cancer (e.g., “you are in a unique position to help others – especially your close relatives – learn about their risk for ovarian cancer. What we learn from your participation in this study will help other women who are at risk for ovarian cancer.”).

YFC Website

The CS data and relational-level theories suggested that two key content sections are important for a website that aims to promote family genetic risk communication: (1) a relative contact menu for survivor to enumerate close relatives (i.e., the large ask) and pros and cons of each contact option; and (2) suggested steps for having difficult conversations about inherited risk (shown in Fig. 3). As described below, the contact preferences and related justifications gleaned during the CS findings guided the narrative content in these webpages. The information in this section focuses on family genetic risk communication and does not include all the information presented on the study website.

Fig. 3.

Matching large ask, relational theories, and CS results to the study website design.

Fig. 3.

Matching large ask, relational theories, and CS results to the study website design.

Close modal

Survivor Contact Preferences and Concerns

We explored several concerns regarding survivors’ contact preferences in the interviews and survey responses. First, we explored survivors’ intentions for sharing risk information and reasons for not wanting to share. Most survivors who participated in Task 4 data collection (50/58) reported that they had communicated about inherited risk with at least some of their at-risk family members. Survivors reported sharing information to protect their relative’s health (mean = 4.4; std = 0.96; range: 1–5), or to fulfill “an obligation to share” (mean = 4.1; std = 1.44; range: 1–5). For the minority of survivors who did not share information with at-risk relatives (n = 8), the most common reasons were: no desire to share (mean = 2.86; SD = 1.12; range: 1–4), unaware they needed to share the information (mean = 2.86; SD = 1.12; range: 1–4), unable to initiate the conversation (mean = 2.57; SD = 1.05; range: 1–4), and estrangement from the relatives (mean = 2.57; SD = 1.40; range: 1–4).

Second, we explored survivors’ preferred contact options by having them rank them in the survey. Task 2 survey responses indicated that survivors (n = 44) generally favored contacting at-risk relatives personally (mean = 4.2; SD = 0.96; range: 1–5), with other options such as “health professional” (mean = 2.9; SD = 1.32; range: 1–5) and “public health organizations” (mean = 2.8; SD = 1.20; range: 1–5) viewed less favorably. Survivors generally were agreeable to having a third party follow-up with relatives after they had made the personal contact (mean = 3.9; SD = 1.12; range: 1–5).

Third, during the structured interviews, we explored why each contact option was favored or less preferred. Survivors indicated that their willingness to personally reach out to a specific relative depended on their emotional and physical closeness with the relative. For example, the longest cancer risk conversations that survivors (n = 50) reported were with relatives to whom they felt the closest (mean = 4.19; std = 1.00; range: 1–5). Some survivors indicated that it was easier and more natural to discuss the implications of their ovarian cancer diagnosis with relatives they felt the closest to emotionally (quotes: I find it so easy to talk to my family because of the relationship we have, but if I didn’t have that, I don’t know how I would respond [survivor, female]; I would say in the family … some of them … didn’t either wanna get involved, or sometimes there was a strange relationship there [survivor, female]).

On the other hand, survivors reported that they were most agreeable to having a credible and trustworthy third-party reach out to relatives to share risk information and offer genetic counseling when they had infrequent contact with the relative, were reluctant to discuss cancer risk, or when privacy concerns were less paramount. In structured interviews, survivors reported preferring alternative contact options for more distant relatives because finding the “right” timing for these discussions was more challenging. Some survivors preferred alternative contact approaches so that their relatives would take the risk more seriously (quote: but I don’t think that she’ll be as responsive as if somebody else will call her and say, “Hey. This is a serious thing, and you should be looking in toward it.” [survivor, female]). Some survivors were reluctant to discuss cancer risk and genetic counseling with young women relatives because they felt these young women were not “ready” to hear the information (quotes: some families were very concerned about their confidentiality and privacy, and that if somebody knew this, that our family had these tainted mutations that they would never marry [survivor, female]).

Relative Contact Preferences and Concerns

We also compared the contact preferences of relatives with the preferences of survivors. Relatives’ (N = 46) Task 3 survey responses suggested more favorable views of multiple contact approaches. Although relatives favored direct contact from the survivor (mean = 4.5; SD = 1.00; range: 1–5), they were open to other contact options such as receiving follow-up from a third party after visiting a website (mean = 4.3; SD = 1.04; range: 1–5), and health professional contact (mean = 4.1; SD = 1.04; range: 1–5). Not surprising, both survivors (n = 37) and relatives (n = 38) were least comfortable with the option of no contact (mean = 1.7; SD = 1.23 & mean = 2.2; SD = 1.42 respectively, ranges: 1–5), suggesting that they did not want to be left out of cancer risk communication.

Relatedly, relatives reported that they mostly preferred personal contact from survivors because of trust (quotes: getting information from somebody you know, or another family member, is more trustworthy than just someone calling you out of the blue [relative, female]). Relatives agreed with survivors that relational closeness would make the conversation easier (quote: just because she was close, and a relative, and I trust her [relative, female]). As a few relatives further explained, having shared the experience of the survivor’s cancer treatment journey provided an opportunity for cancer risk conversations (quotes: Because it’s been within my family, and we’ve been through it together with the loss of my aunt going through ovarian cancer, it’s just easier to talk about it that way [relative, female]; I’m fine with family reaching out with their experience because that’s the best knowledge is someone that’s been through it already [relative, female]). The expertise of the individual reaching out to relatives was viewed to be very important to relatives (quote: if it was very clearly a university and ovarian cancer, I would probably look at the website and check it out [relative, female]).

Procedure for Enumerating At-Risk Relatives

In accordance with relational autonomy and based on the CS findings, the webpage offers three contact options for each individual at-risk relative identified by a survivor (online suppl. material C): survivor contact (i.e., the survivor personally reaches out to the enumerated relative), health professional contact (i.e., the YFC study team reaches out to the enumerated relative), or delayed contact (i.e., reconsider for contact later). The website prompts survivors to enumerate the first name and/or the last name of all first- and second-degree relatives, and specify the relationship (e.g., mother) in a drop-down list. The page presents survivors with a list of first-degree relatives (i.e., parents, children, and siblings) and second-degree relatives (i.e., grandparents, grandchildren, aunts, and uncles) [57]. The webpage prompts survivors to select a preferred contact approach from the menu of outreach options.

The webpage also describes the pros and cons of each contact option to help survivors decide on an outreach approach for each enumerated relative. For example, for the choice “survivor contacts,” the website narrative suggests that this approach may be best when survivors: (1) have a close personal connection with the relative, (2) want to choose optimal timing for discussion, and (3) have privacy concerns about a third-party’s outreach. The contrasting viewpoint is that this approach may be less ideal when the survivor: (1) does not have frequent contact with the relative, (2) has a personal history with the relative that makes discussions difficult, or (3) is unsure of what to communicate because the specific recommendations are unclear. Survivors who opt to contact their relatives personally can then download a customizable letter, which offers the relative access to the YFC website.

Survivors who select health professional contacts see a prompt on the page to provide their relative’s contact information (e.g., mailing address, email, and/or phone number). The webpage explains that “Health professional contacts” may be best if the relative is open to hearing health information from an outsider and is reluctant to discuss cancer concerns with the survivor. Conversely, this approach may be unsuitable for relatives who have heightened privacy concerns. The webpage encourages the survivor to let the specified relative know that they will be contacted and by whom. The study team follows up by sending a study cover letter to these relatives with the information to access the website.

Building Family Communication Skills

Another key insight gleaned from CS activities was the difficulty survivors had initiating conversations with some family members. Survivors described cancer risk conversations as “difficult” because relatives were unfamiliar with ovarian cancer risk or because they could not find a right time for the discussion. Others expressed difficulty initiating the conversation because they or their relatives were not emotionally ready (quote: But I don’t wanna walk up to my family member who’s endured that and be like – oh, well, what was this and what was that like? And what does that even mean and things like that because it’s not necessarily a touchy subject for all people, but it’s not necessarily like an open door to initiate a conversation [survivor, female]). Survivors commonly reported emotional barriers such as feeling uncomfortable, scared, or concerned about being pitied that made initiating cancer risk conversations difficult.

Based on these findings, we developed the Sensitive Conversations Tip Sheet (online suppl. material D), which drew from research on doctor-patient communications related to end-of-life and serious illness [58‒61]. As suggested by interdependence theory [36, 37], we assumed that concerns with protecting the family would motivate risk conversations. Thus, we focused on fostering a sense of “we-ness” to view genetic risk as a shared family problem and to consider cancer prevention as a shared family responsibility.

To this end, the “tip sheet” encourages planful and intentional communication sessions that emphasize respect for relational differences. This respect could, in turn, build more trusting relationships with a view toward shared responsibility for preventing cancer within the family. The “tip sheet” outlines five steps: (1) develop a communication plan, (2) assess the relative’s understanding of shared cancer risk, (3) emphasize the “we-ness” behind communication motives, (4) prepare for relative’s having emotional reactions, and (5) encourage the relative to take advantage of genetic counseling. The “tip sheet” also encourages survivors to acknowledge that the risk of ovarian cancer could interfere with the relative’s life, and that the survivors’ goal was to protect the relative’s health and the survivor-relative relationship. Survivors could download the tip sheet to guide their conversations.

Interventions designed to encourage family genetic risk communication have relied, almost exclusively, on individuals with pathogenic variants as purveyors of communication flow [19, 62‒64]. These interventions largely have shown insignificant improvements in risk awareness and genetic service uptake among the breadth of at-risk relatives [19, 63]. We and others have encouraged a broadened approach in which interventions consider the relational and interdependent structure of families and build “we-thinking” that views risk communication as a shared responsibility [41, 64]. To this end, we applied two theories – interdependence and relational autonomy – to develop a low-touch, low-cost, and scalable public health intervention with the goal to promote family communication about possible inherited risks, ultimately enabling these individuals to access genetic counseling where they can discuss the appropriateness of genetic testing.

An important theory-informed element of our intervention design is that we ask survivors to select contact options that align with the specific nature of their relationship with each at-risk relative. For each option, we suggest potential pros and cons to consider in deciding on the “best” contact option so that survivor’s autonomy is preserved. For example, health professional contact may be more beneficial if survivors have not been in regular contact with their relatives, or when relational dynamics might create obstacles that prevent open discussion within the family. The options and related pros and cons were derived from CS interviews with affected families.

We also developed a sensitive conversations tip sheet for families to address citizen scientists’ identified concerns about the special sensitivity of ovarian cancer risk compared to other cancers. No validated screening tests for ovarian cancer are available [65]. Thus, it is commonly diagnosed at an advanced stage with a poor prognosis [66]. Communication theories tell us that under these circumstances, information avoidance is common [67] and CS collaborators reported that these challenges hindered their discussion of shared cancer risks with their relatives [68]. Building on patient-provider communication frameworks for end-of-life conversations, we developed a pragmatic and simple communication tool that acknowledges differences in relationship closeness and is designed to build survivor’s efficacy to create opportunities for these discussions.

In conclusion, our communication intervention is the first to draw from relational-level theories and the latest theorizing in relational autonomy as a guiding ethical principle. It is innovative in that we partnered with a state-wide survivor advocacy network and cancer survivors and close relatives as citizen scientists to develop intervention content. In collaboration with the state registry, we are testing the intervention in a randomized controlled trial (clinical trial registration identifier: NCT04927013) as a population-based communication outreach approach that offers the potential for sustainability and scalability for other hereditary cancers and other states. We hypothesize that this theory-based, CS-informed approach will result in greater reach and uptake of genetic services than standard care, and will ultimately increase the likelihood for fair distribution of genomic advances as a model for future interventions.

We gratefully thank our citizen science collaborators for their important contributions in their community data collection outreach efforts: Jess BeCraft, Susan Bossert, Jan Byrne, Kelly Cannova, Jade Gibson, Phyllis Gilbert, Nancy Hicks, Aryn Kinney, Cindy McKinnon Deurloo, Regina Parker, Stacy Saravo, Marilyn Slodki, Summer Southern, and Kamilah Staggers. We thank Peachtree Solutions for programming the YFC website (www.yourfamilyconnects.org). The collection of cancer incidence data in Georgia was supported by contract HHSN261201800003I, Task Order HHSN26100001 from the NCI, and cooperative agreement 6NU58DP006352-05-01 from the CDC.

This study protocol was reviewed and approved by the Emory University Institutional Review Board, approval number [STUDY00000224]. Written informed consent was obtained from participants to participate in the study.

The authors have no conflicts of interest to declare.

The research was funded by a grant from the National Cancer Institute of the National Institutes of Health (5U01CA240581-02) and the Winship Cancer Institute, P30CA138292. The sponsor has no role in the preparation of data or the manuscript.

Colleen M. McBride and Yue Guan conceived the intervention design and acquired funding. Colleen M. McBride, Yue Guan, Cam Escoffery, James R. Shepperd, and Rebecca D. Pentz supervised methodology and theory linking. Jingsong Zhao and Gavin P. Campbell managed data collection for the citizen science project. Michael Komonos led the visual design of intervention materials. Yue Guan and Cecelia Bellcross generated the intervention content related to genetic counseling. Kevin Ward provided consultation on the Georgia Cancer Registry collaboration protocol. Jingsong Zhao took the lead in writing the manuscript with consultation and support from Colleen M. McBride and Yue Guan. All authors participated in the intervention development process and contributed to the final version of the manuscript.

The Emory Institutional Review Board has restricted the public sharing of the data. The underlying results presented in the study are available from Mr. James Leonard, Chief Information Officer, Rollins School of Public Health, james.leonard@emory.edu. Further inquiries can be directed to the corresponding author.

1.
US Preventive Services Task Force
Owens
DK
,
Davidson
KW
,
Krist
AH
,
Barry
MJ
,
Cabana
M
.
Risk assessment, genetic counseling, and genetic testing for brca-related cancer: US preventive services task force recommendation statement
.
JAMA
.
2019
;
322
(
7
):
652
65
.
2.
Petrucelli
N
,
Daly
MB
,
Pal
T
BRCA1-and BRCA2-associated hereditary breast and ovarian cancer
Seattle (WA)
University of Washington
2022
.
3.
Norquist
BM
,
Harrell
MI
,
Brady
MF
,
Walsh
T
,
Lee
MK
,
Gulsuner
S
.
Inherited mutations in women with ovarian carcinoma
.
JAMA Oncol
.
2016 Apr
2
4
482
90
.
4.
Daly
MB
,
Pilarski
R
,
Yurgelun
MB
,
Berry
MP
,
Buys
SS
,
Dickson
P
.
NCCN guidelines insights: genetic/familial high-risk assessment: breast, ovarian, and pancreatic, version 1.2020
.
J Natl Compr Canc Netw
.
2020 Apr
18
4
380
91
.
5.
Konstantinopoulos
PA
,
Norquist
B
,
Lacchetti
C
,
Armstrong
D
,
Grisham
RN
,
Goodfellow
PJ
.
Germline and somatic tumor testing in epithelial ovarian cancer: ASCO guideline
.
J Clin Oncol
.
2020
;
38
(
11
):
1222
45
.
6.
Mendes
A
,
Paneque
M
,
Sousa
L
,
Clarke
A
,
Sequeiros
J
.
How communication of genetic information within the family is addressed in genetic counselling: a systematic review of research evidence
.
Eur J Hum Genet
.
2016 Mar
24
3
315
25
.
7.
Roberts
MC
,
Dotson
WD
,
DeVore
CS
,
Bednar
EM
,
Bowen
DJ
,
Ganiats
TG
.
Delivery of cascade screening for hereditary conditions: a scoping review of the literature
.
Health Aff
.
2018 May
37
5
801
8
.
8.
Childers
CP
,
Childers
KK
,
Maggard-Gibbons
M
,
Macinko
J
.
National estimates of genetic testing in women with a history of breast or ovarian cancer
.
J Clin Oncol
.
2017
;
35
(
34
):
3800
6
.
9.
Pozzar
RA
,
Berry
DL
.
Patient-centered research priorities in ovarian cancer: a systematic review of potential determinants of guideline care
.
Gynecol Oncol
.
2017 Dec
147
3
714
22
.
10.
Dheensa
S
,
Lucassen
A
,
Fenwick
A
.
Limitations and pitfalls of using family letters to communicate genetic risk: a qualitative study with patients and healthcare professionals
.
J Genet Couns
.
2018
;
27
(
3
):
689
701
.
11.
Williams
CD
,
Bullard
AJ
,
O’Leary
M
,
Thomas
R
,
Redding
TS
4th
,
Goldstein
K
.
Racial/ethnic disparities in brca counseling and testing: a narrative review
.
J Racial Ethn Health Disparities
.
2019 Jun
6
3
570
83
.
12.
Clark
NM
,
Roberts
EA
,
Fedorenko
C
,
Sun
Q
,
Dubard-Gault
M
,
Handford
C
.
Genetic testing among patients with high-risk breast, ovarian, pancreatic, and prostate cancers
.
Ann Surg Oncol
.
2023 Mar
30
3
1312
26
.
13.
Samimi
G
,
Bernardini
MQ
,
Brody
LC
,
Caga-Anan
CF
,
Campbell
IG
,
Chenevix-Trench
G
.
Traceback: a proposed framework to increase identification and genetic counseling of BRCA1 and BRCA2 mutation carriers through family-based outreach
.
J Clin Oncol
.
2017
;
35
(
20
):
2329
37
.
14.
Gaff
CL
,
Clarke
AJ
,
Atkinson
P
,
Sivell
S
,
Elwyn
G
,
Iredale
R
.
Process and outcome in communication of genetic information within families: a systematic review
.
Eur J Hum Genet
.
2007 Oct
15
10
999
1011
.
15.
Nycum
G
,
Avard
D
,
Knoppers
BM
.
Factors influencing intrafamilial communication of hereditary breast and ovarian cancer genetic information
.
Eur J Hum Genet
.
2009
;
17
(
7
):
872
80
.
16.
Chivers Seymour
K
,
Addington-Hall
J
,
Lucassen
AM
,
Foster
CL
.
What facilitates or impedes family communication following genetic testing for cancer risk? A systematic review and meta-synthesis of primary qualitative research
.
J Genet Couns
.
2010 Aug
19
4
330
42
.
17.
Wiseman
M
,
Dancyger
C
,
Michie
S
.
Communicating genetic risk information within families: a review
.
Fam Cancer
.
2010 Dec
9
4
691
703
.
18.
Srinivasan
S
,
Won
NY
,
Dotson
WD
,
Wright
ST
,
Roberts
MC
.
Barriers and facilitators for cascade testing in genetic conditions: a systematic review
.
Eur J Hum Genet
.
2020 Dec
28
12
1631
44
.
19.
Baroutsou
V
,
Underhill-Blazey
ML
,
Appenzeller-Herzog
C
,
Katapodi
MC
.
Interventions facilitating family communication of genetic testing results and cascade screening in hereditary breast/ovarian cancer or lynch syndrome: a systematic review and meta-analysis
.
Cancers
.
2021 Feb 23
13
4
925
.
20.
Peterson
SK
.
The role of the family in genetic testing: theoretical perspectives, current knowledge, and future directions
.
Health Educ Behav
.
2005 Oct
32
5
627
39
.
21.
Koerner
AF
,
Fitzpatrick
MA
.
Family communication patterns theory: a social cognitive approach
. In:
Braithwaite
D
,
Baxter
L
, editors.
Engaging theories in family communication: multiple perspectives
Thousand Oaks, CA
Sage
2006
. p.
50
65
.
22.
Koerner
AF
,
Schrodt
P
.
An introduction to the special issue on family communication patterns theory
.
J Fam Commun
.
2014
;
14
(
1
):
1
15
.
23.
Galvin
KM
,
Braithwaite
DO
.
Theory and research from the communication field: discourses that constitute and reflect families
.
J Fam Theory Rev
.
2014
;
6
(
1
):
97
111
.
24.
Fonner
VA
,
Ntogwisangu
J
,
Hamidu
I
,
Joseph
J
,
Fields
J
,
Evans
E
.
We are in this together: dyadic-level influence and decision-making among HIV serodiscordant couples in Tanzania receiving access to PrEP
.
BMC Public Health
.
2021 Apr
21
1
720
.
25.
Mermelstein
R
,
Lichtenstein
E
,
McIntyre
K
.
Partner support and relapse in smoking-cessation programs
.
J Consult Clin Psychol
.
1983
;
51
(
3
):
465
6
.
26.
Mermelstein
R
,
Cohen
S
,
Lichtenstein
E
,
Baer
JS
,
Kamarck
T
.
Social support and smoking cessation and maintenance
.
J Consult Clin Psychol
.
1986
;
54
(
4
):
447
53
.
27.
McBride
CM
,
Curry
SJ
,
Grothaus
LC
,
Nelson
JC
,
Lando
H
,
Pirie
PL
.
Partner smoking status and pregnant smoker’s perceptions of support for and likelihood of smoking cessation
.
Health Psychol
.
1998 Jan
17
1
63
9
.
28.
McBride
CM
,
Baucom
DH
,
Peterson
BL
,
Pollak
KI
,
Palmer
C
,
Westman
E
.
Prenatal and postpartum smoking abstinence a partner-assisted approach
.
Am J Prev Med
.
2004
;
27
(
3
):
232
8
.
29.
Bastian
LA
,
Fish
LJ
,
Peterson
BL
,
Biddle
AK
,
Garst
J
,
Lyna
P
.
Assessment of the impact of adjunctive proactive telephone counseling to promote smoking cessation among lung cancer patients’ social networks
.
Am J Health Promot
.
2013 Jan-Feb
27
3
181
90
.
30.
Donenberg
GR
,
Kendall
AD
,
Emerson
E
,
Fletcher
FE
,
Bray
BC
,
McCabe
K
.
IMARA: a mother-daughter group randomized controlled trial to reduce sexually transmitted infections in black/African-American adolescents
.
PLoS One
.
2020
;
15
(
11
):
e0239650
.
31.
Ake
JF
,
Lin
J
,
Wilkinson
AV
,
Koehly
LM
.
Motivating Mexican American adults to share family history with healthcare providers
.
Prev Med Rep
.
2021 Jun
22
101384
.
32.
Peters
JA
,
Kenen
R
,
Hoskins
LM
,
Koehly
LM
,
Graubard
B
,
Loud
JT
.
Unpacking the blockers: understanding perceptions and social constraints of health communication in hereditary breast ovarian cancer (HBOC) susceptibility families
.
J Genet Couns
.
2011
;
20
(
5
):
450
64
.
33.
Jennings
B
.
Reconceptualizing autonomy: a relational turn in bioethics
.
Hastings Cent Rep
.
2016 May
46
3
11
6
.
34.
Zimmerman
FJ
.
Public health autonomy: a critical reappraisal
.
Hastings Cent Rep
.
2017
;
47
(
6
):
38
45
.
35.
Asiedu
GB
,
Ridgeway
JL
,
Carroll
K
,
Jatoi
A
,
Radecki Breitkopf
C
.
“Ultimately, mom has the call”: viewing clinical trial decision making among patients with ovarian cancer through the lens of relational autonomy
.
Health Expect
.
2018
;
21
(
6
):
981
9
.
36.
Lyons
R
,
Mickelson
K
,
Sullivan
M
,
Coyne
J
.
Coping as a communal process
.
J Soc Pers Relat
.
1998
;
15
(
5
):
579
605
.
37.
Lewis
MA
,
McBride
CM
,
Pollak
KI
,
Puleo
E
,
Butterfield
RM
,
Emmons
KM
.
Understanding health behavior change among couples: an interdependence and communal coping approach
.
Soc Sci Med
.
2006 Mar
62
6
1369
80
.
38.
Koehly
LM
,
McBride
CM
.
Genomic risk information for common health conditions: maximizing kinship-based health promotion
. In:
Tercyak
KP
, editor.
Handbook of genomics and the family issues in clinical child psychology
New York
Springer Science + Business Media, LLC.
2010
. p.
407
33
.
39.
Guan
Y
,
McBride
CM
,
Rogers
H
,
Zhao
J
,
Allen
CG
,
Escoffery
C
.
Initiatives to scale up and expand reach of cancer genomic services outside of specialty clinical settings: a systematic review
.
Am J Prev Med
.
2021 Feb
60
2
e85
e94
.
40.
National Institutes of Health
Traceback testing: increasing identification and genetic counseling of mutation carriers through family-based outreach. U01 research project: cooperative agreements 2018
(cited 2023 Mar 13). Avaiable from: https://grants.nih.gov/grants/guide/pa-files/PAR-18-616.html.
41.
Dove
ES
,
Kelly
SE
,
Lucivero
F
,
Machirori
M
,
Dheensa
S
,
Prainsack
B
.
Beyond individualism: is there a place for relational autonomy in clinical practice and research
.
Clin Ethics
.
2017
;
12
(
3
):
150
65
.
42.
Forbes Shepherd
R
,
Browne
TK
,
Warwick
L
.
A relational approach to genetic counseling for hereditary breast and ovarian cancer
.
J Genet Couns
.
2017 Apr
26
2
283
99
.
43.
Arriaga
XB
.
An interdependence theory analysis of close relationships
. In:
Simpson
JA
,
Campbell
L
, editors.
The Oxford handbook of close relationships
Oxford University Press
2013
. p.
39
65
.
44.
Van Lange
PAM
,
Balliet
D
.
Interdependence theory
. In:
Mikulincer
M
,
Shaver
PR
, editors.
APA handbook of personality and social psychology
American Psychological Association
2015
.
45.
Lustria
ML
,
Cortese
J
,
Noar
SM
,
Glueckauf
RL
.
Computer-tailored health interventions delivered over the Web: review and analysis of key components
.
Patient Educ Couns
.
2009 Feb
74
2
156
73
.
46.
Rogers
MA
,
Lemmen
K
,
Kramer
R
,
Mann
J
,
Chopra
V
.
Internet-delivered health interventions that work: systematic review of meta-analyses and evaluation of website availability
.
J Med Internet Res
.
2017 Mar 24
19
3
e90
.
47.
Freedman
JL
,
Fraser
SC
.
Compliance without pressure: the foot-in-the-door technique
.
J Pers Soc Psychol
.
1966 Aug
4
2
195
202
.
48.
Joule
R-V
,
Girandola
F
,
Bernard
F
.
How can people be induced to willingly change their behavior? the path from persuasive communication to binding communication
.
Soc Personal Psychol Compass
.
2007
;
1
:
493
505
.
49.
Girandola
F
.
Sequential requests and organ donation
.
J Soc Psychol
.
2002 Apr
142
2
171
8
.
50.
Dolin
DJ
,
Booth-Butterfield
S
.
Foot-in-the-door and cancer prevention
.
Health Commun
.
1995
;
7
(
1
):
55
66
.
51.
Taylor
T
,
Booth-Butterfield
S
.
Getting a foot in the door with drinking and driving: a field study of healthy influence
.
Commun Res Rep
.
1993 Jun
10
1
95
101
.
52.
McBride
CM
,
Campbell
GP
,
Zhao
J
,
Pentz
RD
,
Escoffery
C
,
Komonos
M
.
Applying citizen science to engage families affected by ovarian cancer in developing genetic service outreach strategies
.
PLoS One
.
2022
;
17
(
2
):
e0262575
.
53.
Wiggins
A
,
Wilbanks
J
.
The Rise of citizen science in health and biomedical research
.
Am J Bioeth
.
2019 Aug
19
8
3
14
.
54.
Watkins
DC
.
Rapid and rigorous qualitative data analysis: the “RADaR” technique for applied research
.
Int J Qual Methods
.
2017 Dec
16
1
160940691771213
.
55.
Taylor
B
,
Henshall
C
,
Kenyon
S
,
Litchfield
I
,
Greenfield
S
.
Can rapid approaches to qualitative analysis deliver timely, valid findings to clinical leaders? a mixed methods study comparing rapid and thematic analysis
.
BMJ Open
.
2018 Oct 8
8
10
e019993
.
56.
Gale
RC
,
Wu
J
,
Erhardt
T
,
Bounthavong
M
,
Reardon
CM
,
Damschroder
LJ
.
Comparison of rapid vs in-depth qualitative analytic methods from a process evaluation of academic detailing in the Veterans Health Administration
.
Implement Sci
.
2019 Feb
14
1
11
.
57.
National Cancer Institute
NCI dictionary of genetics terms
National Cancer Institute
. (cited 2023 Jun 12). Available from: https://www.cancer.gov/publications/dictionaries/genetics-dictionary/.
58.
Buckman
R
.
Breaking bad news: why is it still so difficult
.
Br Med J
.
1984
;
288
(
6430
):
1597
9
.
59.
Buckman
R
Breaking bad news: a guide for health care professionals
Baltimore
Johns Hopkins University Press
1992
.
60.
Monden
KR
,
Gentry
L
,
Cox
TR
.
Delivering bad news to patients
.
Proc
.
2016
;
29
(
1
):
101
2
.
61.
Baran
CN
,
Sanders
JJ
.
Communication skills: delivering bad news, conducting a goals of care family meeting, and advance care planning
.
Prim Care
.
2019 Sep
46
3
353
72
.
62.
Shah
LL
,
Daack-Hirsch
S
.
Family communication about genetic risk of hereditary cardiomyopathies and arrhythmias: an integrative review
.
J Genet Couns
.
2018
;
27
(
5
):
1022
39
.
63.
Young
AL
,
Imran
A
,
Spoelma
MJ
,
Williams
R
,
Tucker
KM
,
Halliday
J
.
Proband-mediated interventions to increase disclosure of genetic risk in families with a BRCA or Lynch syndrome condition: a systematic review
.
Eur J Hum Genet
.
2023
;
31
(
1
):
18
34
.
64.
Zhao
J
,
Guan
Y
,
McBride
CM
.
A systematic review of theory-informed strategies used in interventions fostering family genetic risk communication
.
Patient Educ Couns
.
2022 Jul
105
7
1953
62
.
65.
Liberto
JM
,
Chen
SY
,
Shih
IM
,
Wang
TH
,
Wang
TL
,
Pisanic
TR
2nd
.
Current and emerging methods for ovarian cancer screening and diagnostics: a comprehensive review
.
Cancers
.
2022 Jun 11
14
12
2885
.
66.
Howlader
NNA
,
Krapcho
M
,
Miller
D
,
Brest
A
,
Yu
M
,
Ruhl
J
SEER cancer statistics review; 1975-2017
National Cancer Institute
. (cited 2022 Dec 12). Available from: https://seer.cancer.gov/archive/csr/1975_2017/.
67.
Sweeny
K
,
Melnyk
D
,
Miller
W
,
Shepperd
JA
.
Information avoidance: who, what, when, and why
.
Rev Gen Psychol
.
2010
;
14
(
4
):
340
53
.
68.
Emanuel
AS
,
Kiviniemi
MT
,
Howell
JL
,
Hay
JL
,
Waters
EA
,
Orom
H
.
Avoiding cancer risk information
.
Soc Sci Med
.
2015
;
147
:
113
20
.