A Community-Based Qualitative Assessment of Knowledge, Barriers, and Promoters of Communicating about Family Cancer History among African-Americans

Abstract

Family cancer history (FCH) can shape prevention and early detection behaviors to decrease cancer risk. However, many individuals are unaware of increased risk for cancers based on family patterns. For some African-American communities, communication about FCH is rare and barriers have not been well studied. To optimize the use of FCH, it is crucial to understand how patients gather and share FCH with relatives and healthcare providers. We conducted four focus groups (n = 40) and seven key informant interviews (n = 9) to investigate knowledge, experiences, and barriers/promoters of FCH in the East Baltimore African-American community. Thematic analysis identified 14 distinct themes across six communication domains: participants’ understanding of FCH, past FCH communication with family and providers, barriers to FCH communication, promoters of FCH communication, suggestions for future communication, and community health priorities. FCH was most often defined by narratives of family cancer experiences, and the majority of participants had shared little FCH with family members. Five psychosocial domains were commonly reported as barriers to sharing FCH: fear/denial, pride/dignity, selflessness/self-sacrifice, cancer fatalism, and distrust/skepticism of medical care. Diagnosis/death and caregiving/social support promoted FCH communication and encouraged cancer prevention behaviors such as screening. Although most participants had experienced cancer in their families, communication about FCH was low and psychosocial barriers were common. Understanding these communication domains in minority populations is crucial to developing interventions to address disparities in cancer prevention and control, particularly where effective screening and care recommendations exist for those with positive family histories.

Cancer is the second leading cause of death in the United States. However, the burden of cancer is not equally distributed; African-Americans remain more likely to die from cancer than any other racial or ethnic group in the United States. Cancer death rates for non-Hispanic black men and women are 29% higher and 15% higher, respectively, compared to their non-Hispanic white counterparts (American Cancer Society, 2018). Each year around 189,910 African-Americans in the United States are newly diagnosed with cancer, of whom around 36% are expected to die from cancer. Thus, there is a substantial need for tools and interventions to reduce the cancer disparities experienced by the US African-American population.

Cancer risk is shaped by a complex combination of environmental, behavioral, and genetic factors. Family health histories (FHH) provide a snapshot of many of these factors shared across multiple generations of biological relatives. A family’s healthy history is a record of the conditions and diseases present within a family and is “a useful tool for understanding health risks and preventing disease for individuals and their close relatives” (Berg et al., 2009). FHH has been long been recognized as a “feasible, initial method” for assessing an individual’s risk level for a host of preventable chronic conditions, including many types of cancer (Valdez, Yoon, Qureshi, Green, & Khoury, 2010). When individuals are determined to be at increased risk for cancer, prevention and early detection interventions (e.g., screening) are known to dramatically decrease cancer burden when promoted appropriately to these target groups. Thus, FHH is an important and accessible tool families and providers can use to more effectively identify individuals who may be at increased risk for cancer and thus, likely to benefit from such interventions (Yoon et al., 2002).

Over the past decade, cancer researchers and clinicians have been increasingly interested in the use of family cancer history (FCH) as a simple, efficient, and cost-effective public health tool for cancer prevention and control. Through collection of detailed genealogies, FCH has become a starting point for decision-making during genetic counseling sessions. Specifically, FCH can guide recommendations for genetic testing for hereditary cancers (e.g., BRCA testing) and/or prevention (e.g., prophylactic mastectomy). FCH/FHH also shapes individual behavior change. Individuals with knowledge of a family history of disease are more likely to be aware of their risk factors and adopt risk-reducing lifestyles and screening behaviors (Ashida, Goodman, Stafford, Lachance, & Kaphingst, 2012; Baptiste-Roberts et al., 2007).

Although many people recognize the importance of knowing FHH, this information is not routinely collected by most individuals (Welch, O’Connell, & Schiffman, 2015). There is a growing evidence base of research to identify factors that promote or discourage collection and use of FHH. To date, several studies have examined barriers and facilitators of communication about FHH to better understand how this information is shared within families, recorded, and reported to healthcare providers (Forrest, et al., 2003; Rodriguez, Corona, Bodurtha, & Quillin, 2016). However, reviews of this literature have noted the need to explore the factors surrounding FHH communication in more diverse populations. To date, only a handful of studies have focused on FHH communication among underrepresented populations, including medically underserved communities (Ashida et al., 2012; Kaphingst et al., 2012) and African-Americans (Hovick, Yamasaki, Burton-Chase, & Peterson, 2015; Manswell Butty et al., 2012; Thompson et al., 2015).

Among some African-American communities, a lack of communication about family health, and more specifically cancer history, is pronounced and barriers to this communication have not been well studied. Only two studies to date have explored in-depth the barriers encountered by African-Americans to communicating FHH (Hovick et al., 2015; Thompson et al., 2015), and one evaluated a workshop-based intervention to increase FHH knowledge in this population (Manswell Butty et al., 2012). While these studies examined FHH holistically, none focused on communication of family history of cancer, specifically. Given these pronounced research gaps and the knowledge that cancer disparities stem partially from differences in uptake in prevention (American Cancer Society, 2018), more research is needed to investigate and identify specific barriers to FCH communication among African-American communities. Furthermore, in response to a community-identified need, the present study investigated factors shaping communication of FCH among African-American families in Baltimore, Maryland.

The disparate rates of high cancer burden experienced by African-Americans in Baltimore are well-documented (Baltimore City Health Department, 2014). As a step toward addressing this disparity, a former Baltimore City mayor contacted the research team and expressed the need for research exploring communication about FCH among the African-American community in East Baltimore. In response to this community health issue, we conducted a qualitative study to investigate knowledge, perceptions, barriers, and facilitators of collecting and sharing FCH in this underserved African-American community, with the goal of informing future community-based interventions.

Methods

Focus group discussions

Between May and June 2016, 40 African-American East Baltimore residents, age 18 and older, were recruited and enrolled to take part in four focus group discussions (FGDs) at East Baltimore community-based organizations. These organizations included a re-entry program for ex-offenders, a halfway house, a church community, and a local food hall that hosts health-related information tables from local agencies like the Johns Hopkins Urban Health Institute. The first two locations provide assistance for integrating community members back into society, whereas the second two locations serve the general community. There were 9–12 participants at each of the four FGDs. The participants were equally divided between women and men, with an average age of 49 years (range: 19–79). Since it was likely that community members would be less familiar with the topic of FHH, we believed that this method of group discussion would promote brainstorming and experience sharing. In addition, since the study was focused on identifying barriers and promoters to FHH communication in the local African-American community, focus groups would also allow a larger number and variety of community participants compared to other methods, such as individual interviews.

An African-American female faculty member, with extensive experience in East Baltimore engagement and out-reach and training in qualitative research, facilitated each FGD, and an additional study investigator was also present to take notes. The FGDs were centered around a semi-structured moderator’s guide, which focused on six key communication domains to guide the sessions: (1) defining FHH and FCH; (2) past cancer communication experiences with family and providers; (3) barriers to communicating FCH; (4) promoters of communicating FCH; (5) improving or increasing communication of FCH; and ((6) perceived community health priorities (Appendix). At the start of each session, the facilitator explained the purpose and procedures, noted that there were no right or wrong answers, and encouraged each participant to express his or her opinions. At the conclusion of each FGD, the facilitator and study investigators clarified any misconceptions expressed during the discussion and answered questions. The FGDs were audio recorded and transcribed verbatim, noting the gender and the age of each speaker. Food was provided, and each participant received a $25 gift card. In accordance with the Johns Hopkins University Institutional Review Board, informed consent was collected from each participant prior to the start of recorded discussions.

Semi-structured key informant interviews

Key informants were identified based on community out-reach, policy, and community leadership roles they held related to health and wellness in Baltimore. Informants were approached by the study facilitator about interest in participating in the interviews. Six individual interviews and one small group interview were conducted with nine key informants, including a former Mayor of Baltimore, a former Maryland State Representative, an administrator of the local chapter of the American Cancer Society, a community out-reach representative from Baltimore City Health Department, an administrator for East Baltimore Community Affairs at The Johns Hopkins Medical Institutions, and a community activist in cancer prevention.

The decision to do key informant interviews, as opposed to FGD, with these leaders was based on the aim of better understanding how individuals took actions and made decisions based on their own knowledge and the perspective of those they lead and interact with in their community. The in-depth interview is a more flexible method and allowed for more privacy in talking about sensitive issues they perceived within their community and relating to their professional roles. The same facilitator led the key informant interviews, with a set of guiding questions oriented around the same six key areas as the FGD guide (Appendix). The interviews were audio recorded and transcribed. Informants indicated personal motivation to share their experiences but were not provided with additional compensation.

Data processing and analysis

Each FGD lasted a median of 67 min (range: 52–80), and key informant interviews ranged from 30 to 45 min (median = 37). Recordings of FGDs and key informant interviews were transcribed verbatim. A coding directory was created using the moderator questions and a preliminary reading of transcripts. A trained qualitative researcher (SMJ) coded all transcripts to identify primary thematic areas and the data was entered into Dedoose online software (“Dedoose,” 2013) to further facilitate thematic analysis (Braun & Clarke, 2006). The major themes (n = 14) are presented, organized around the six communication domains of the moderator’s guide. Transcript excerpts were identified to illustrate each theme. To contextualize the findings, responses from all participants regarding perceptions of the top health priorities in the community are summarized.

Results

Domain 1: Defining FCH

Participants were first asked what the terms “family health history” and “family cancer history” meant to them. Two contrasting themes emerged across participant responses (Table 1): “health history as a pattern of illness” and “cancer history as a lived experience.” The majority of participants defined FHH as a pattern of illness or disease in a family, marked by reasons why family members died or as health issues present in living family members. Notably, responses cited genetics as well as behavioral patterns as components of FHH. Participants also noted how these patterns could impact their own health. Comments representing common conceptualizations of FHH include

Table 1.

Themes that emerged across communication domains from the focus group discussions (N = 4; participants = 40) and key informant interviews (N = 7; participants = 9).

Domain 1: defining FHH and FCH in the community

Theme 1: FHH as patterns of illness

Theme 2: FCH as stories and experiences

Domain 2: past communication

Theme 3: “It’s just what you get”//It’s not talked about because it just happens

Theme 4: FHH talks that do happen = family calls to action (e.g., getting screened)

Theme 5: distrust limits FCH communication with providers

Domain 3: barriers to FCH communication

Theme 6: fear and denial

Theme 7: pride and dignity

Theme 8: selflessness/self-sacrifice

Theme 9: cancer as a death sentence

Domain 4: promoters of FCH

Theme 10: diagnosis or death of a loved one triggers FCH communication

Theme 11: caregiving and support needs require FCH communication

Domain 5: suggestions to improve or increase communication

Theme 12: include celebrities in the message

Theme 13: messages should be simple, concise, easy

Domain 6: health priorities

Theme 14: cancer is not perceived to be a top health priority for the AA East Baltimore community//there are many competing health priorities alongside cancer

Family health history … is having a comprehensive picture of everything previous to me, my parents, my grandparents, and hopefully my great grandparents, what in fact was their portfolio of health. So, what did they suffer from, were they healthy, what were their eating habits, what were their sleep habits, what were their stressors; because I feel like it has shown and is reflective in generations after that of how well people take care of themselves. Because a lot of it is taught behavior, in terms of how healthy one can be. (Female informant)

Well, just what your parents have died from or what their family health has been up to their point of demise or if they are still here, what it currently is. Like your brothers and siblings, you know; what are the conditions that they may have existing, because it is more than likely that we could all develop something close to or the same things. (Female participant)

And in one case, a participant connected her FHH directly to cancer history, specifically:

Well when I talk about my family health history, I think about the type of cancers that we have had, the risk, what have brought us to this, and most of it links back to smoking. (Female informant)

As the question shifted to FCH, participants offered a different interpretation. Rather than offering broad definitions, nearly all participants started to share stories of how cancer had directly impacted their families. Specifically, participants talked about various family members who had been diagnosed with, died from, or survived cancer.

Well I mean, I just think my grandmother and all my uncles died from cancer. I don’t know if that is a health conversation, seems like everybody in my family died. (Female participant)

In most cases, participants identified specific types of cancer impacting family member(s).

So, we have cancer big time on both sides. We don’t have diabetes in my family. … but that cancer, all the women except for my sisters, no except for me, have had hysterectomies because the uterus had tumors or something. So, it is always there, even if you don’t talk about it openly, that’s just in our family. (Female participant)

Domain 2: Past cancer communication experiences

Next, participants were asked if they had shared their FCH with relatives and with healthcare providers. Three key themes emerged from this discussion question: lack of FCH communication within families due to the inevitability of cancer, FCH as a call to action, and hesitancy to discuss FCH with providers. The majority of participants reported that they and their family had not discussed this history. In some cases, participants explained that FCH was not discussed because of perceptions of cancer as inevitable; it is “just what you get.”

I come from a family where cancer is just what you get, it is not talked about .… As you get older you get cancer. My father died at age 52 … my mother had uterine cancer … you know everybody had some kind of cancer … We had that shadow of waiting for something to hit you know. (Female participant)

For other participants, the frequency of cancer in the family prompted discussion. FCH conversations often occurred over time as relatives experienced different types of cancer.

All my life I have been hearing it …, like your family had a barbeque and they would say so and so got cancer, you know what I mean. (Female participant)

Among the few who did talk about cancer history with their families, these discussions were often framed as a call to action, typically through a relative who encouraged others to seek out preventive care.

It was [discussed] because my grandmother had breast cancer. My mother always told us; mom took care of everybody but mom, so make sure you get your screenings done, for breast cancer; “make sure you get the girls checked” is what she would say. We always knew that breast cancer, we were at risk for that. (Female informant)

My grandmother’s older brother died of cancer … and then one of her sisters died, and then that was when everybody started going to get checked out. (Male participant)

Similarly, several informants connected knowledge of one’s FCH to current health behaviors, discussing how their FCH has prompted them to seek certain screenings and/or regular check-ups with their healthcare providers.

I know from my own family history that ovarian cancer runs in my family. So, I don’t take that lightly, I make sure that [it] is tested every year, and in fact, just recently having testing done to see if I carry that gene. So, it is essential that we pay attention to all the factors that relate to cancer. (Female informant)

In contrast to FCH discussions with relatives, sharing this history with health providers was less common. Responses highlighted the gap in communication from discussions among families to translating this information to the health-care setting. In only one of four group discussions, participants indicated having had conversations with their doctor about FCH. Of the two men who reported such conversations, one described it as a routine part of going to the doctor, while the other indicated a family doctor may know much of this information already.

I mean if you communicate with your doctor, the hard stuff like cancer and AIDS [and] all that stuff, they are going to ask you all that first. Anybody that deals with a doctor, that is the stuff they ask you to begin with. (Male participant)

More often, participants discussed distrust as a reason for not sharing FCH with healthcare providers. Sources of distrust ranged from lack of confidence in the doctor’s medical knowledge, to dislike of doctors who are fast to prescribe pills, and a discussion of how ability to pay affected quality of care.

It just gets to me, the first thing they want to know is do you have insurance. If your insurance pays right the whole conversation changes. (Male participant)

I think that is the one thing that I hate with doctors too, I don’t need somebody that thinks everything can be solved with just take this, well take this, you don’t feel good, take this. You don’t even know what they tell you, they just give you pills or something .… (Male participant)

Domain 3: Barriers to communicating FCH

Given the lack of FCH communication with family members as well as providers, we next explored perceptions of the obstacles to such communication. Themes in this topic area illustrated three commonly perceived challenges to cancer history communication among families. Participants across all groups identified similar psychosocial barriers to communicating about FCH, including fear and denial, pride/dignity, selflessness and self-sacrifice, and the belief that cancer is a death sentence.

Fear and denial

Throughout the FGDs, numerous participants expressed a belief that individuals, including their own family, avoid discussing their family cancer health history (and cancer in general) because they are fearful of the unknown, of the diagnosis, and of dying. Some participants expressed that talking about cancer was like inviting something bad to happen, not wanting to talk about a topic they viewed as scary and unpleasant, and suggested there was nothing you could do about it so why talk about it. Participants’ fears were mainly rooted in the lack of knowledge and basic understanding of cancer (i.e., causes of cancer, stages of diagnosis, treatment options, and cancer prevention).

People are scared, they want to wish it out of existence, you know. (Male participant)

Something is wrong and they spend years running away from it and they finally find out what it is and find out how simple it was to take care of it; alright I could have taken care of this years ago if I had not been scared. (Male participant)

Informants expressed that often in their conversations with individuals in the community the barriers of fear and denial were often combined. As with the focus group participants, fear was rooted in the lack of knowledge and basic understanding of cancer. Informants described how they often hear individuals say they don’t want to know if they have cancer, that not knowing at times is better than knowing.

[People say] “I don’t want to know if I have cancer.” I am like, why wouldn’t you want to know? There is so much out here now that can save your life, why wouldn’t you want to know? The sooner the better. (Female informant)

Sometimes there are religious overtones, spiritual overtones … [V]arious communities, particularly the African American community, believe that when it is your time to leave, you leave. I am in denial about this condition,” a barrier of denial; and “I will avoid it by not thinking about it.” But God is in control so I really can’t do much about it… (Male informant)

For some participants, increasing their cancer knowledge allowed them to move beyond fear to become more proactive regarding their health. These participants encouraged others to seek out more information in order to overcome fear about cancer.

[People fear cancer] Because they don’t have any control over it. It is the unknown, and they are afraid of the unknown, and so it is easier to think, it may sound crazy, it is easier to think of the unknown as something that is going to kill you. It is like a Darth Vader or something that fell out of the sky. For me I don’t know, all I know is that when I heard it, I knew right then and there that I had to be a part of my healing; and that was to say “yes” I am going to fight this thing. (Female participant)

We need to share information, be able when you go to the doctor to ask the right questions, to be able to give and write information so your diagnosis won’t be drawn out and you need to teach your children how to think and research and when you hear something that makes you afraid, find out everything about it that you can .… the more information and the more you talk about it, it helps to alleviate the fear because knowledge gives you more confidence. (Female participant)

Dignity and pride

Dignity and pride were often discussed as reasons why family members did not disclose diagnoses or share cancer histories. Participants expressed that denying one’s FCH meant not having to face the possibility of one’s own diagnosis. And even when diagnosed, denial was often used as a way to protect one’s dignity. Participants brought up concerns about male pride and masculinity and female pride associated with losing the role of family nurturer. Participants who had experienced their own diagnosis admitted withholding this information from family as they didn’t want to be treated differently.

I think sometimes they are just going through denial, you know. [T]he knowledge that you are sick and you know that you are used to being the nurturer, so you think about that and what is going to happen to everyone else … and just refuse to accept it. (Female participant)

A lot of people have that self-pride; they don’t want anybody to know. (Male participant)

In regards to the issues of dignity and pride, participants thought age and gender differences were potential reasons why they would not discuss their FCH.

Even though now it is not the same, I’ve watched a generation of people … and I’m going to call it a false sense of dignity, but dignity nevertheless, for that person who says “I don’t want to say this,” “I don’t need your pity,” and “I don’t want you to deal with me differently;” and so if I don’t say anything … if you don’t know that about me, we will laugh and talk and have a good time; whereas if you know if I have that [cancer], you might start talking to me different, you might start looking at me different. It is not contagious, but still somehow it just feels like a dignity issue or something. (Female participant)

Guys, we got too much pride. It is just something in us, like “Man, I’m strong.” I think who feels vulnerable is a guy; go to the hospital and find something vulnerable, it is scary you know. (Male participant)

Selflessness and sacrifice

Another theme that was present across discussions was the selflessness and self-sacrifice of women. Participants discussed how women tend to be the primary caretaker and the effect that may have on taking care of themselves or sharing their diagnosis. One informant raised the belief that their families’ well-being always comes before their own. As such, they would deny their diagnosis and/or delay sharing the information with their family to spare the impact on their loved ones. The discussion did not reflect the detrimental impact that not obtaining care or putting women first would have on her ultimate ability to care for others.

It was so frightening and because of my family history I was only thinking about well I have to put certain things in order and until I know where it is going to, there is no need for me, you know, some of my children are just young adults just trying to get their own problems going on, and I said I’m not even going to bother you, and I did not tell anybody. (Female participant)

We discovered my mom was sick with cancer … they did the biopsy and said her liver was 75% gone there wasn’t really much they could do. But none of us knew that she was that sick because she always went to work; she was a nurse. Because you know how us women are. .… Work, work, work and sometimes we just don’t think about ourselves, we think about the people we take care of and basically that was what she was doing. Nobody suspected it. (Female participant)

Cancer is a death sentence

For most of the participants, the barrier to discussing FCH or cancer in general simply came down to the belief that cancer is a death sentence. Therefore, there isn’t any reason to talk about it or share this information with others as there is nothing that can come of it. This further underscored the lack of value participants place on this information. They often hear of people being diagnosed and then dying. Treatment and cure are rare in African-American communities.

This summer I seen it when I was in prison, everybody that had cancer in there ended up dying from it. You know like when they asked me if I wanted to be tested, I told them no. She said why? I said because if I have it you won’t let me know until I am terribly ill, so what is the use of doing it? She had no word for that. (Male participant)

… [P]robably one of the most common things I have heard when it comes to cancer is like, I just have to die of something. So, me not knowing isn’t going to hurt me one way or the other. Like if I have it I am going to probably die so it doesn’t really matter. (Female informant)

Another informant highlighted how lack of cancer knowledge in the African-American community correlated with perceptions of fatalism.

I think beyond fear is also the stigma. So, we look at it, at least in the African American community, cancer, like, is terminal; when in fact in a lot of cases, it is not terminal. (Female informant)

Domain 4: Promoters of communicating FCH

Although participants encountered substantial barriers to communication, many also identified experiences that could serve as opportunities to promote such discussions. Two themes identified events that promoted FCH or discussions about family cancer: diagnosis or death of a family member and need for caregiving and social support.

Diagnosis and death force a discussion

For many participants, it was not until a family member experienced a positive cancer diagnosis that conversations about FCH began. One informant discussed in great detail how her own diagnosis prompted her to explore her FCH. This forced family members to tackle a subject that many in the study labeled a “taboo.” She explained why these are not easy conversations to have with one’s family and at times will require multiple conversations.

… [A]fter hearing “hey I might have cancer,” that required me to say to my family, you know, is there a history? … can you tell me if anybody else has ever been diagnosed? And come to find out … my paternal grandmother had ovarian cancer and was treated and survived. And so, nobody had ever communicated, it wasn’t information that people shared .… So, you know, it required several conversations … I think people were afraid to share it because cancer among … any family is taboo; just anything that is going on medically can be taboo for a family. (Female informant)

Throughout the discussions, several participants expressed that it was the death of a family member that prompted discussing his or her FCH. Discussions initially started by focusing on the family member who died. But these discussions evolved to include other members who had passed away because of cancer. Sometimes participants were not aware that a family member had cancer, but they assumed that cancer was the root cause but never had it confirmed by another family member. As a result of these discussions, it was evident that family members were more willing to discuss FCH after a relative passed away. This loss promoted a discussion about FCH and what relatives needed to do for their own prevention.

I know we had a conversation in my family around that because I did have a sister who died of colon cancer, and during that time, you know, her daughter and son talked more about getting screened, of course they were younger; but talked about the importance of getting screened. But you know nothing happens in terms of a discussion or conversation around these things until something happens. (Female informant)

Because my husband also passed from complications due to oral cancer, it is big for us so we always talk about signs and symptoms and you know my son is 28 so we making sure okay you do need your prostate checked, so I need you to do certain things and as long as I am here I will be his alarm clock saying, did you do this, did you do that, as well as with my daughter. (Female informant)

A family member in need

For several participants, a family member needing assistance in the form of caregiving or social support promoted communication about FCH. Participants described how members of their family were forced to reveal their diagnosis because they needed support – getting to doctor’s appointments for treatment or emotional support as things became more difficult.

I was the oldest of the family so taking my mother and father to the doctor, I carried my mother to the doctor to take treatments for about eight months every day. (Male participant)

So when she [relative] told me, I just tried to be very positive, and I just was the one who made sure she went to her treatments and took her when she had to have her surgery, and I stayed with her when she needed help. (Female participant)

Domain 5: How to improve or increase FCH communication

Next, participants were asked to provide their ideas on possible public awareness campaigns with the goal of promoting African-Americans to discuss FCH. The two themes that emerged were to keep messages for the community simple and engaging, and to include celebrities in the messages (Table 2). Participants thought having national and local celebrities in print advertising and commercials would be an effective way to encourage discussions about FCH, especially if the celebrity addressed how he/she discussed their FCH with their own families and used this information to improve health.

Table 2.

Suggestions for future public awareness campaigns to increase FCH communication.

Suggestions	Focus groups	Key informants
Add FCH questions to in-take forms	-	1
Celebrities as messengers	14	4
Community outreach	4	3
Clear/concise/positive messages	8	8
Health education	3	5
Engage providers in delivering message	2	1
Focus on positives about screening	1	1
Lifestyle choices related with cancer	4	1
Mobile units	2	-
Music to deliver messages	3	-
Survivors as messengers	1	4
Use of the Internet	1	-
Youth	-	4

[O]ver at the Department of Social Services they run commercials on a loop and there is a commercial with … celebrities that is about literacy. So, I mean, it is an entertaining commercial, but it catches your attention because they are being funny, and it has faces that you recognize. (Male participant)

I think that messaging has to be very much positive; has to be innovative. Steve Harvey does a video talking about his own journey for doing a colonoscopy, which I think is phenomenal; but it really is a place where people familiar to other people have to talk about their own journeys as well. I think that helps. I think that we have to hear the reasons why people who are African American have the screening and who are in fact been in remission for the cancers they have been screened for and found the diagnosis. Because I think when people hear other people’s journeys, they feel like, “well if that person can do it, I can do it as well.” (Female participant)

Regardless of the celebrity, participants strongly felt messages had to be short, entertaining, and use simple language that the target population would understand.

The message, I believe, has to be … something that is short and catchy. In the African American community if you go in and use 15-letter words, who is going to take the time to read it? It has to be almost in music, because we love music. Need something that will catch on real quick, you know. (Female participant)

[Y]ou talk about information that is out there, but if it is not at the level at which most people can understand it, it is nothing, it means nothing. … Everybody doesn’t read well, and so let’s get it down, there is information out there but … make sure the person understands it or give it in a form they can understand it, otherwise it is useless. (Female participant)

Domain 6: Perceived community health priorities

Finally, participants were asked what they considered to be the major health issue(s) in their community (Baltimore City). The most common health issue reported by focus group participants was drug and alcohol addiction. This issue was also identified by several key informants. Among informants, obesity was the most commonly mentioned pressing health issue raised but was not mentioned by focus group participants. Conversely, lack of health insurance was the second most commonly identified issue among focus group participants, but not raised by informants. A wide array of additional health concerns was also identified by one to two participants each, including environmental factors, poison, behavioral risk factors such as nutrition and smoking, chronic conditions like diabetes and asthma, mental health, and one informant who reported cancer as the health priority in the community Notably, only one key informant and none of the focus group discussants named cancer as the top health priority for the community. Other issues raised by focus group participants included (a) lack of health education, (b) lack of education in general, (c) environmental things (not specified), and (d) lack of hope. Issues raised by key informants included (a) unemployment and (b) poverty.

Differences between key informant and focus group participant responses

There were differences between focus group participants and informants when discussing FHH/FCH. For example, focus group participants explained the two concepts based on personal stories on how cancer impacted their family (i.e., deaths, recent diagnosis, survivors). On the other hand, informants provided more formal explanations and had experiences discussing FHH/FCH with their family members and healthcare providers. Furthermore, informants discussed the value of knowing and sharing FCH, and how this knowledge motivated them to take steps to reduce his/her health risk such as getting health screenings, adopting a healthier diet, and stopping smoking. Almost none of the focus group participants recognized value in knowing or sharing his or her health history with family or their healthcare provider.

In terms of barriers to communicating FHH/FCH, both groups identified (a) fear, (b) denial, and (c) the belief that cancer equates to a death sentence. Informants connected the lack of basic cancer knowledge to be a driving factor in perpetuating these barriers. At the same time, focus group participants identified dignity and pride as a barrier indicating that one’s self-pride drives many to avoid sharing their diagnosis for fear that they don’t want to be treated differently and don’t want to ask for assistance. This was interesting as focus group participants identified the need for family assistance as a facilitator to sharing one’s cancer diagnosis. Other facilitators for communicating FHH/FCH identified by both groups included death and diagnosis. Focus group participants highlighted having local and national celebrities serve as the messengers would make the campaign more impactful. Informants noted that educating the population on basic cancer knowledge should include how lifestyle choices play a role in one’s health and be a focal point of any campaign regarding FHH/FCH.

Discussion

Family history reflects shared genetic, behavioral, and environmental exposures, so individuals who have family members affected by certain chronic conditions are at higher risk, often by twofold or threefold, of developing those conditions themselves (Colditz, Kaphingst, Hankinson, & Rosner, 2012; Kaphingst et al., 2012; Valdez et al., 2010). Studies have found that patients with a known family history of disease or chronic illness are more likely to be aware of their risk factors and adopt risk-reducing lifestyle and screening behaviors (Ashida et al., 2012; Baptiste-Roberts et al., 2007). In addition, this history can help providers identify people most likely to benefit from additional prevention and early detection activities (e.g., early screening, lifestyle modifications). However, using FCH to guide screening and prevention requires that individuals are knowledgeable of and can accurately report their FHHs to providers. Welch and colleagues note that while individuals may have a general sense of their FHH (e.g., “cancer runs in my family”), many struggle to provide the detailed information needed for a complete family history and risk assessment (Welch, Dere, & Schiffman, 2015). Thus, it is important to examine the degree to which populations, especially underserved communities, can document and communicate these histories in the healthcare context.

The city of Baltimore experiences a substantially higher cancer mortality rate than the national average (217 vs. 186 per 100,000), with a historically higher mortality among African-Americans (Baltimore City Health Department, 2014). Understanding barriers to communication in under-served populations with known health disparities is important to address these disparities, particularly in the case of positive family history of cancer where effective screening mechanisms and recommendation for care exist. In response to a community-identified need, we examined knowledge of FCH and the factors that shape family communication about these histories among African-Americans in East Baltimore, Maryland, a community with the potential to see tangible benefits from interventions to improve and utilize FHH for cancer prevention. We found that although most participants identified at least one family member who had had cancer few families openly communicated cancer history: details of cancer histories were largely unknown and this information often did not translate to the healthcare setting. Unfortunately, the present study revealed a substantial lack of basic knowledge of cancer, screening, and follow-up care, and distrust of the medical system. Examples of lack of knowledge included questions such as “what is cancer,” whether secondhand smoke causes cancer, and believing that cancer is unavoidable. For some in the study, the lack of knowledge about cancer was a driving factor in the fear of discussing cancer risk and seeking out preventive services or treatment.

Psychosocial factors including fear/denial, pride/dignity, selflessness, and fatalistic attitudes about cancer were commonly reported barriers to sharing cancer history with their family. These themes were consistent with findings from prior studies, which have suggested that low health literacy, shame, fatalism, worry, and cultural health beliefs may underpin disparities in FHH communication among minority communities (Ricks-Santi et al., 2016; Rodriguez et al., 2016). The denial theme present in participant responses is consistent with other recent qualitative research on family discussions of health information among African-American women (Thompson et al., 2015). That study also reported that concerns about privacy, particularly between generations of family members, was a barrier to communication. Similarly, concerns about pride or dignity resulting in refusal to share health information with relatives, especially among older family members (e.g., older parents of adult relatives), were common in the present study. These findings highlight the need for community health education related to cancer risk factors, prevention, and treatment, and addressing psychosocial concerns around cancer.

Although there was notable agreement between focus group participants and informants regarding cultural factors that related to the psychosocial barriers to communicating FCH, several differences in perceptions of discussing family cancer health were noted. For informants, discussions regarding FCH were more normative, while group responses were more consistent with the “noncommunicative” family patterns documented by previous research (Hovick et al., 2015). This was due in part to the nature of some of their work being in health or outreach-related fields, increased cancer knowledge, as well as differences in their family health culture. As a result, informants were more likely to express value in discussing and knowing their FCH and made use of it regarding prevention and early detection. In contrast, community focus group participants said FCH communication was promoted primarily a result of a family member’s death, diagnosis, or need for assistance, and most did not express value in knowing or sharing his or her FCH. Furthermore, focus group participants expressed more hesitancy in discussing his or her health history with family or their healthcare provider and generally focused more on their sense of distrust of the medical field (e.g., the belief that one’s income determines the level of care received), a finding consistent with past literature that highlights the need for cultural competency in intervention research for this population (Manswell Butty et al., 2012). Additional differences were found regarding perceptions of the major health issues in Baltimore City. Residents identified drug and alcohol addiction as major health issues, whereas informants identified obesity. Given the low levels of knowledge expressed about cancer in general, and about the concept or value of family health/cancer history, it was not surprising that community members did not identify cancer as the major health priority. In this community, drug and alcohol addiction is highly prevalent and is outwardly apparent, through close relationships, media outlets, and related crime. It is interesting to note that the key informants identified obesity as the number one health issue in this community since it is strongly linked to suite of other major health conditions, including cancer.

Perceptions and barriers to FCH also differed between the men and women. Many men mentioned that they do not like to show their emotions and leave themselves vulnerable, whereas they feel women talk about their cancer diagnosis, cry, and get support. For example, one quote from a male participant in the study that highlights perceived differences is: “I think there is a difference in, like guys, how we handle things. I think women are easier in that they talk about, and deal with, what they want to do; guys, we got too much pride.” On the other hand, the theme of self-sacrifice by women was raised in the FGDs by both men and women. There were many examples of how women are nurturers and protectors, so they hide their illness or diagnosis from family, and put others ahead of their own well-being. However, no participant commented on the long-term consequences, such as later stage at diagnosis or less effective treatment options, which can come from delaying screening or follow-up after a diagnosis because of self-sacrifice.

The findings from this study stress the need for community interventions focused on both increasing general cancer knowledge and reinforcing the importance of discussing FCH. Participants mentioned the importance of health education and discussed the need to educate the population regarding lifestyle choices and cancer knowledge. Educational interventions to facilitate improved comprehension and collection of FHH have been successfully developed. For example, Kelly and colleagues recently reported that a peer-based educational session to teach family history pedigree (family tree) collection paired with motivational messages increased positive perceptions of FHH collection and intentions to talk with family members (Kelly, Shedlosky-Shoemaker, Atkins, Tworek, & Porter, 2015). Additionally, Manswell Butty and colleagues reported success of genetics and family history workshops for African-Americans (Manswell Butty et al., 2012). To inform future interventions, we asked participants to identify communication strategies they thought would be likely to motivate members of the community to engage in FHH conversations. Participants suggested short, engaging messages around modifiable risk factors, cancer screening and sharing family history, with music or local celebrities, as message strategies to promote FHH collection in the community. Two informants suggested incorporating the use of smartphones via an application to collected FCH that would be accessible to all family members. Currently, such tools exist, including the Surgeon General’s “My Family Health Portrait” (U.S. Department of Health and Human Services, 2017), but are substantially underutilized (Welch et al., 2015). A recent national survey found that less than 3% of respondents had ever used Web-based tools to collect FHH (Welch et al., 2015). Community interventions that promote existing, validated public health tools offer a first step toward promoting family communication about health history and collection of health histories for preventive care.

This study provided in-depth insights into a community’s understanding of FHH and the barriers and facilitators of communication around this topic. However, the nature and small size of the study sample, drawn from one African-American community with high cancer burden in the Mid-Atlantic region, prevents conclusion and generalization of study findings beyond this local setting or comparisons to other subgroups in Baltimore. However, many of the themes identified in the present study aligned with those reported in past studies conducted in other community settings, indicating some degree of consistency in the barriers families face in communicating health histories with each other and with healthcare providers (e.g., Hovick et al., 2015; Thompson et al., 2015). Additionally, the qualitative nature of the study relied on participant self-reports of FHH knowledge. Future studies should consider how self-reported knowledge could be compared to more objective FHH information, such as medical records, to determine the extent to which family histories are accurately recalled by participants. Finally, a limitation to use of focus groups is that some individuals may feel pressure by other participants’ responses or by the way the moderator phrased the question, thereby affecting their own responses.

At its 2009 State-of-the-Science Conference on Family History and Improving Health, the National Institutes of Health concluded that “family history has an important role in the practice of medicine and may motivate positive lifestyle changes, enhance individual empowerment, and influence clinical interventions” (Qureshi et al., 2009). While focusing on the individual’s role in the FCH communication process is important, attention must also be paid to the integral role healthcare providers can play regarding FHH collection. Focus group participants indicated that providers often did not ask them about their FCH. Others noted the lack of a consistent healthcare provider, further complicating the ability to incorporate FHH into primary preventive care. Based on our findings, suggestions for addressing communication on FCH in African-Americans include providing community outreach and basic cancer education (prevention, history, screening, and treatment), enhance patient/provider communication, develop a tool kit to map FCH, and conduct public education campaign to increase screening, reduce fear, emphasis great progress in treatment, and reverse the belief that cancer is a death sentence.

Appendix

Semi-structured focus group moderator guide

	Focus	Key
	groups	informants
(1) Family health history/family cancer history What does family health history mean to you? What does family cancer history mean to you? How would you define/described family health history? How would you define/described family cancer history?	X X	X X
(2) Past communication experiences With family members Have you shared or has your family shared their health history? What about cancer history? Do you think your family cancer history is important? Have you had a conversation or has your family had a conversation regarding family cancer history?	X X X	X
With healthcare providers Have you talked with a doctor about your family cancer history? Do you think it’s important to tell your doctor your family’s cancer history?	X X
(3) Barriers to communicating family cancer history What are the barriers to sharing information about your family cancer history? Why do you think people do not talk about family cancer history? What are the barriers for discussing family cancer history?	X X	X
(4) Promoters of communicating family cancer history What are the things that encourage or promote sharing family cancer history? What are promoters for discussing family cancer history?	X	X
(5) Future communication about cancer history Would you have a conversation about cancer history with your family? What would be helpful material to facilitate discussion on family health history/family cancer history? If we are going to do a campaign to promote African-Americans to talk about their cancer history, what do you think we should do? How should we do it? What do you think are ways to encourage black/African-Americans to talk about family cancer history?	X X X X	X X
(6) Health priority in Baltimore City What do you think is the number one health issue in Baltimore City?