“Who Do You Tell? When Do You Tell Them? What Do You Tell Them?” How People With Chronic Lymphocytic Leukemia Manage Communication About Their Health

The purpose of this exploratory study was to learn more about the social experiences of people with chronic lymphocytic leukemia (CLL), with respect to diagnosis disclosure, communicating one’s health risks to others in the context of COVID-19, and managing positive and negative support. Communication privacy management theory framed this study. Thirty-eight participants took part in interviews. Phenomenological analysis yielded 4 themes: strategizing disclosure; reconciling others’ paradigms of cancer; living with CLL during the COVID-19 pandemic; and seeking, receiving, and managing support. By learning more about these experiences, cancer navigators, oncologists, and mental health professionals will be better equipped to support the psychosocial needs of patients and their families. Clinical and research implications are addressed.

Chronic lymphocytic leukemia (CLL) differs from other cancers in that immediate treatment following diagnosis may not be necessary, treatment may be intermittent, and as a chronic condition, patients may be told they will die with CLL, not of it.¹ In addition, many people diagnosed with CLL may not require immediate treatment. Instead, their white blood cell counts are monitored until oncologists deem it necessary for them to start immunotherapy or chemotherapy (ie, watch and wait).¹ The purpose of this study was to learn more about the social experiences of people with CLL with respect to diagnosis disclosure, communicating one’s health risks to others in the context of COVID-19, and managing positive and negative support. By learning more about these experiences, cancer navigators, nurses, oncologists, and mental health professionals will be better equipped to support the psychosocial needs of patients and their families. Moreover, while CLL contains unique properties regarding treatment and prognosis, there may be transferability to people living with other chronic health conditions.

While there is a known association between social environment and health, the direction of that relationship varies depending on whether the social environment is offering positive or negative forms of support.

Literature Review

Extant literature offers little on the well-being of people with CLL or how they discuss their diagnosis with family members, although one article has been published on the well-being of family caregivers of people with CLL.² Even less is known about the impact of the COVID-19 global pandemic on CLL patients. However, the canon of cancer literature has addressed in depth the necessity of appropriate forms of support. The social environment comprises interpersonal relationships in one’s family, peer group, work, neighborhood, faith organizations, and support groups.³ While there is a known association between social environment and health,^4-7 the direction of that relationship varies depending on whether the social environment is offering positive or negative forms of support.^8,9 In the face of a cancer diagnosis, supportive family members bolster one’s quality of life.^10,11 However, even well-intentioned partners and relatives may struggle with what to say and do.¹²

COVID-19 Concerns

Research on other cancer populations indicates that people living with cancer during the COVID-19 pandemic are often aware of being high-risk, report being especially concerned about contracting the virus, and have expressed frustration about having nonurgent medical appointments canceled.^13,14 Relevant to this study, one article has been published about the COVID-19 experiences of people living with treatable but not curable cancer.¹⁵ Participants described the frustration of not being able to see loved ones and feeling that they were losing precious time to the pandemic. Notably, that study did not include anyone living with CLL.

Communication Privacy Management Theory

This study is grounded in communication privacy management (CPM) theory. The premise of CPM is that people believe their private information belongs to them and that they are intentional in choosing with whom to share or not share information. Grounded in family communication concepts, CPM has been applied to understanding how people share their health information with family, friends, and colleagues.^16,17 Privacy boundaries determine how people decide with whom to share personal information.¹⁸ Privacy turbulence occurs when those boundaries are broken, and one’s privacy is disrupted.¹⁸ Applied to the realm of cancer survivorship, CPM may shed light on how people with CLL choose to share their diagnosis with others.

Research Questions

1. How do people with CLL discuss their diagnosis and prognosis with family, friends, and colleagues?
2. How do people with CLL communicate their personal health risks in the context of COVID-19?
3. What forms of social support do people with CLL describe eliciting? How do those forms differ from what they received?

Methods

This article focuses on the social experiences of people with CLL and comes from a larger phenomenological study on the lived experiences of people with CLL. Interviews were conducted with participants to determine how their relationships have been affected and been affected by their CLL experiences. Further details about recruitment, data collection, data analysis, and member checks were previously published.¹⁹

Data Collection

Towson University IRB #1224 granted approval for this study. Thirty-eight participants were recruited from social media and CLL-oriented websites and listservs. All participants provided written consent before beginning their interviews. Initial interviews took place between December 2020 and May 2021. These interviews lasted 35 to 90 minutes, during which time the first author asked participants about their CLL diagnosis, treatment, communication with friends and family, social support needs, coronavirus concerns, and mental health. A second interview was used for member checking and lasted under 30 minutes. Data collection ceased when the first author determined saturation had been reached.²⁰

Data Analysis

Phenomenological analysis included 3 phases: authors’ independent review of transcripts, identification of meaning units (themes), and development of themes and subthemes.²¹ All authors independently read each interview transcript and noted participants’ descriptions about the phenomenon of CLL’s impact on their relationships. The scrutiny techniques of word repetition, analogies, and similarity and dissimilarity (whether participants described experiences congruently) informed the authors’ development of meaning units, or themes.²² After each author developed a codebook of themes, the research team met to refine the list of themes. After the authors had achieved congruence across their codebooks, the first author conducted member checks to determine whether the themes represented participants’ descriptions of their lived experiences. All participants confirmed that they felt the authors’ summary represented their experiences.

Results

Thirty-eight participants (19 men and 19 women) took part in interviews with the first author. All identified as White. The age range at diagnosis was 40 to 70 years. Time since diagnosis ranged from 3 months to 30 years (μ=8 years). The education range was high school diploma through doctorate, with 14 participants reporting a master’s degree. Four themes are addressed here: strategizing disclosure; reconciling others’ paradigms of cancer; living with CLL during the COVID-19 pandemic; and seeking, receiving, and managing support.

Strategizing Disclosure

Upon receiving a CLL diagnosis, participants described a twofold reaction: what does it mean to have this disease, and how would they tell others? One participant explained how to conceptualize this disclosure: “I call it the 3 W’s: Who do you tell? When do you tell them? What do you tell them?” Most participants told their significant others immediately after their diagnosis but admitted that sharing information with other family and friends was more difficult to navigate.

Reasons to Disclose

Participants considered various factors when deciding to disclose. Some participants spoke about how they had practical support needs, and to receive help they needed to disclose. One participant reflected on the decision to share his diagnosis with his wife only. A medical emergency when she was out of town required the participant to elicit help from others:

I had to ask friends in the area. I first had to tell them that I had cancer and then, “I need you to give me a ride to the hospital right now.” We had 2 sets of friends. One was a neighbor, and the other lived a mile away, and they were gracious about taking me there and back. I couldn’t just use a cab. I needed someone to help me because I was in bad shape.

Some participants sought emotional support from friends and family. “I have 4 really good friends.…I thought I’m going to tell them because we share both our joys and our sorrows.”

When disclosing to children, some participants stated that they valued having no secrets in their family: “My daughter was 18 and my son was 15. My wife and I felt that the kids had a right to be involved immediately in real time. We don’t really keep secrets, so we told them.”

Reasons Not to Disclose

Oftentimes, when reasoning why not to disclose to certain people or family members, participants spoke of not wanting to burden those that they cared for. Two participants shared that they did not disclose their diagnosis to their parents:

My mom was still living in her late 80s. She was independent and cognizant. Because of her age, I never did tell her I had leukemia. I didn’t want to put that on her shoulders. She would have worried and made herself sick.

My parents were both alive and in pretty good shape. They were living in Florida. My brother and I decided that it would worry my parents, and there wasn’t anything they could do about it. I did a deal with God: “I will do whatever I can to be a good person, but I don’t want my parents to have to bury their son.” My father passed at the age of 90 and my mother at 96, and they never knew.

Another participant shared her worries surrounding opening up about her diagnosis with her children, who were going through significant milestones:

And it was also difficult because our daughter was about ready to graduate from the university, and she had just gotten engaged, and our son had just started at [university] and had just joined a fraternity and was really excited and meeting all of these nice friends. I felt like, here they are at 2 milestone points in their lives, and their mom is going to tell them this news. But I did decide, and they told me later, “Mom, if you would have withheld this from us, we’re a family, you need to share these things, we would have really been hurt and disappointed.” So, I’m glad I did, but it was just terrible timing in the same way.

One participant even feared losing his job: “Not very many people know. I have it in my head–and I know this is not true– that the [military branch] won’t want me around if I tell them. I am not ready to medically retire.”

Other participants spoke about finding disclosure at work difficult to navigate. “I don’t think they would get it. And with the work situation as it is, you don’t want to show any weakness.” One participant even feared losing his job: “Not very many people know. I have it in my head–and I know this is not true–that the [military branch] won’t want me around if I tell them. I am not ready to medically retire.” Others did not want unnecessary attention:

I didn’t hide that I had CLL, but I wasn’t going to walk into a room and say, “Oh, guess what.” I’m not that kind of person. I was treated like a person who didn’t have a disease. Sometimes, that can be a little lonely, but I’m not the kind of person who wants to draw a lot of attention to me either. You can’t have it both ways. [Laughing.] It’s like a fight with myself.

Disclosure Mechanisms

Participants shared the mechanisms they utilized to divulge information about their CLL. For example, some used specific language to soften the news of the diagnosis. “I didn’t say CLL, I said I have a chronic lymphoma. I chose not to use the word ‘cancer.’” Another participant said: “When COVID-19 came, I said I have to be very careful because I have this blood condition. I try not to use the scary words around [mother] all the time, though I’ve told her.” Removing the word “cancer” gave power to the participants and allowed them to control the narrative of their disease. “One thing I said before is I never used the word ‘cancer’ about me. I don’t have cancer; I have CLL. Do I know CLL is a kind of cancer? Of course I do. It seemed to me to be important to say the name of the disease and that it was not necessarily a death sentence right now.”

Participants described varying methods of telling others they had CLL, and this even varied between who they were telling and when:

Not having secrets in the family, it got awkward not telling them. We don’t have secrets. I don’t look any different. That is quite the conversation to have with grown children that you have cancer. We did a phone call with each of them, and then I think we told them in person.

Disclosure Regrets

Many participants reported that they regretted sharing their CLL diagnosis. Some remorse stemmed from the way the information was disclosed. For example, one participant lamented texting his daughter about his diagnosis rather than calling or sharing in person:

And this is what I regret: I said, “Oh no, now I need to tell [daughter].” And my primary form of communication, both [wife] and I, with our daughter has been through texting. She’s young enough that technology is her preferred way of communication, so I texted her, which I regret. Because it blindsided her, and she really didn’t have a means by which she could process the news that she had received. And basically, she told me later that she spent a sleepless night trying to incorporate the news.

Other regrets centered around individuals feeling as though they burdened their loved ones with the news of their diagnosis. “I wish I hadn’t told my kids.…They have some issues of their own to deal with, and I think sometimes when that’s happening you just can’t take another thought in your brain and process it.” Another participant shared:

I’ve always regretted telling my father because it was very difficult for him. It was very hard for him that I told him. I had always regretted telling him. To this day I still regret telling him. It would have been hard to keep it from him, but I regretted telling him and my mother too. They’re divorced, but I really regretted telling both of them. My father was very upset, and a couple of his friends told me how upset he was. He was always a strong guy, but my intent was never to upset anyone. I really felt sorry that I told them.

Ongoing Disclosure

Since CLL is not curable and not typically life-limiting, disclosure is an ongoing process. Individuals must continuously decide who they share information with throughout their life. “The issue that raises this is, who do you tell, and when? It’s kind of a constant challenge in terms of…yeah. I found that I tended to share with people that I have close and important relationships with.” Ongoing disclosure also encompasses sharing updates about health and treatments throughout one’s journey with CLL.

Reconciling Others’ Paradigms of Cancer

Participants acknowledged that as CLL patients, they did not have the same treatment plan as many other cancers, and others would not be able to tell they were sick just by looking at them. One participant revealed, “It’s like my wife said, ‘You don’t look like a cancer patient. You don’t act like a cancer patient. Therefore, you are not.’” Some participants felt the people in their lives did not grasp the realities of CLL, leading participants to feel misunderstood. Many participants related to the idea of looking healthy while living with CLL, and some found themselves having to remind the people in their life of their diagnosis and the effects: “My wife will occasionally say that because I look so good sometimes, she has to remember that I have this, because even my treatment hasn’t impacted my physical appearance.”

Although they were not acutely ill during this time period, some participants noted the lack of empathy they received. One participant stated, “My husband was like, ‘This doesn’t sound so bad. I think you’re going to be okay.’”

Additionally, participants believed they were not viewed as “sick” because they often did not immediately begin treatment. Many participants spoke about their experience of “watch and wait,” or as some people would call it, “watch and worry.” Although they were not acutely ill during this time period, some participants noted the lack of empathy they received. One participant stated, “My husband was like, ‘This doesn’t sound so bad. I think you’re going to be okay.’” Similarly, a participant revealed, “My husband said to calm down and not make assumptions.” Some participants were unsure how others felt, as one participant explained, “If they were concerned, they didn’t show it.”

Other participants empathized with people’s forgetfulness:

And I often feel pretty healthy. So, it’s hard. So yes, people, I think sometimes people will say, “Well, let’s do this, let’s do that, I want you to do this, I want you to do that.” I’ll say, “I can’t do it.” “Well, why?” “Remember?” “Oh, yeah.” I have to remind them. That’s okay. I have to remind myself every now and then.

Some participants even spoke about wishing people would forget about their diagnosis in desiring to remove the worry and imagined burden of their diagnosis: “Yeah, I think some people forget. And I want them to. I want them to forget, really.”

CLL in the Time of COVID-19

Participants described needing to engage in social distancing and mask wearing, both before and after vaccines were made available. The following quote illustrates the perceived need for such caution:

Knowing I have an autoimmune issue, we still have groceries delivered 90% of the time. We are venturing out a bit more now. We still follow all the protocols, handwashing, masks, social distancing, even though we have both had both of our shots. Initially, it was frightening. The next thing I have to deal with might be the thing I can’t overcome. I may end up in the hospital.

At the time of their interviews, some participants had received the vaccine but learned through antibody testing that it was ineffective, meaning that they had to continue practicing the same level of caution even as restrictions began to ease. One person remarked, “Cancer doesn’t care if there is a pandemic.” Another person said, “A lot of CLL patients, it was like everybody was in the same boat, but now that we’re vaccinated, those of us who are high-risk, this is when we feel the most different.” Another person described this pileup of stressors: “It’s a balancing act. It’s not just CLL anymore; it’s CLL with COVID-19 in our life.”

Many participants discussed the frustration of not seeing family and friends and having their lives disrupted. This was especially palpable during the winter holidays. One participant described their attempt at a compromise:

We had the kids and their families over in the driveway. It was when my daughter announced she was pregnant. She wanted to have a big breakfast to make the announcement. So, we set everything up with a table outside and socially distanced. We just stayed apart. They’re not as careful as we are. And that’s kind of hard because I want to be around them. We’ve tried to stay away, but we’ve made exceptions. I thought we could do something outside, but it was so cold. So, we let the kids come inside, and normally we have a big Christmas. But this past Christmas, we had each kid come over with their family separately. But we were in the house without wearing masks. But it felt kind of worth it.

Some participants described feeling tension with individuals in their lives who were not engaging in similar levels of caution or who minimized participants’ health risks regarding potential exposure to COVID-19.

Internal and External Tension

Some participants described feeling tension with individuals in their lives who were not engaging in similar levels of caution or who minimized participants’ health risks regarding potential exposure to COVID-19. One participant described the challenge of communicating their risk to others:

Like Mother’s Day [2020], my whole family got together, extended family with aunts, uncles, and cousins, and they’re in the house. Then my family comes up, and we make everybody come outside, and no one’s said they wouldn’t come, but it’s just in my own internal struggle causing somebody to put a mask on or causing somebody to do something different they wouldn’t ordinarily do. That’s never really happened to me before until this time. I’m dealing with CLL, but it’s still never been something that has put anybody else out until now.

The following quotes demonstrate participants’ perceptions about the political nature of these choices:

A lot of this goes into politics too—they more so forget about the immunocompromised people because they are seeing it as, “My own personal freedoms are being infringed on. Why should I make a sacrifice for someone who is immunocompromised?”

Without putting a political spin on it, there’s too many people not getting vaccinated for me to be comfortable with the current CDC guidelines.…You knew where the blue flags were flying, or the Trump flags were flying. You know that person may not be vaccinated. At least you have an idea of what you might want to be cautious about.

People [at church] saying, “Open the church again, why are we doing this? We’re living out of fear instead of out of faith,” that sort of thing. A couple of people in particular that were very vocal about this. One, I just took aside, and I said, “Look, I’m at a much higher likelihood of getting a severe disease or dying from this. And I’m just not going to do this.” That stopped that conversation in its tracks.

Accepting Others’ Choices

A smaller number of participants viewed their loved ones’ different choices pertaining to mask wearing and vaccination as simply different, neither good nor bad, and discussed the need to adjust their expectations toward those individuals. As one participant explained:

Both my sons don’t want to get vaccinated. I respect their wishes. If I didn’t have leukemia, I don’t know if I would have gotten [the vaccine].…I know some people who aren’t vaccinated, and I still go around them. It’s not like I’m not taking it seriously, I just want to enjoy the days I have left.

Seeking, Receiving, and Managing Support

Experiences of support were discussed at length. Participants described receiving support from their support groups, social groups (friends, religious congregations), coworkers, and family members. Sometimes the support offered wasn’t what participants were necessarily looking for (eg, when a friend insisted on a participant sharing information with others before they were ready).

Community Support

Participants also described receiving positive support from members of their congregation, friends, as well as coworkers. Some participants spoke about how their friends made the effort to consistently reach out to them concerning their diagnosis:

Several of them reach out to me at least once a month to check in on me. Sometimes more often. They are still working; they are not retired. They are all senior executives, and they reach out to me to make sure I am doing okay. Family members and friends reach out. Golfing buddies check in 2 to 3 times a month. The fellow who was my best man, who I have been friends with 67 years, checks in with me frequently and asks how I am doing. They are emotionally supportive. It is hard long-distance, but it’s great knowing you have a network of people who check in.

In terms of religious support, congregations often provided a welcomed sense of community and comfort. “I have good systems and friends there in my faith. I have a bishop and people that would come help at the click of fingers if you needed it.” Another participant shared the duality that religious support brought to her experience: “As soon as I got the diagnosis, everyone started praying and have ever since, but probably not as much as time goes on. I was on the prayer list at church for a while, but after a couple years, they took me off, which is fine.”

However, support from their community was not always positive. Some individuals explained that they lost friends through their diagnosis and that their friends did not know how to properly provide support. “For the most part, I had strong support. You do find out quickly who is truly your friend and who isn’t. For the most part, I had pretty strong support.” Another participant shared:

But there were people who felt very awkward with the ‘cancer’ word and don’t want to bring it up at all. Some of that support drops off because they don’t know what to say to you. So, they were either uber-supportive or pulled back pretty far.

Group Support

CLL support groups were a way for people living with CLL to connect with others, share their stories, and offer validation. “The wonderful support and sharing of experiences...the empathy and compassion that the other members in the support group give to one another is just incredible.” Another participant revealed, “The people in the support group are like a family. Extended family of support. I’ve only met 1 or 2 of them. It’s not what I expected. I had a negative feeling about what a support group would be.”

While many participants benefited from these support groups, hearing other struggles was challenging at times:

I have to get away from the support groups some days. I have to stay positive, and this is bad. You feel sorry for them because they’re just like you. It’s hitting them harder than they thought it would. Some people do end up having trouble with it, and in a support group, you’re probably going to hear the most from them. The people who are doing well aren’t going to have much to say.

Another participant explained that they did not feel connected to the people in the group. “It is just that I am still busy and young and active. I feel like a lot of those people are old, and not me.”

Virtual group support was helpful to some participants because it provided them with access to additional resources. One participant shared, “I was able to go online and go to these meetings for a year now.

Virtual group support was helpful to some participants because it provided them with access to additional resources. One participant shared, “I was able to go online and go to these meetings for a year now. This is another resource of support. It’s been great. My husband listens in.” Social media also enabled people with CLL to connect with each other virtually. “I belong to a couple very informative CLL support groups on Facebook that have proven to be very beneficial.” Another participant shared, “I am on several Facebook CLL pages. It is a good semi-anonymous way to see what people are going through. You can chime in or not as you feel comfortable doing.”

Partner Support

Forms of support from partners (including spouses and unmarried significant others) were largely delineated by gender: female partners’ supportive actions were described as proactive. For instance, participants described female partners who took it upon themselves to research CLL and later COVID-19.

She has been zealous in protecting me, reminding me to wash my hands, and keeping me out of stores. I like to go shopping. She tells me to go Tuesday morning at 9 rather than Monday night to avoid crowds.

I’ve had incredible support from my wife, who has a science interest. She was a teacher but has a science interest. For the last 6 years, she has known more about this disease than most community oncologists. She started following it, read about it every day, 2 or 3 different sites, kept track of what was coming along in terms of new treatments. It got to the point where she and [oncologist] would talk about what they’ve been reading about. She would talk about what she was reading about. They would have this 15-minute conversation. I would finally say we need to go home now [laughing]. That’s been huge to have that kind of support. I would tend to just proceed with a little bit more confidence and less knowledge, and she’s really brought the knowledge piece.

[My wife] and I have very different ways of dealing with the medical community. I tend to believe what they know they’re talking about, so I ask for them to explain things.…She wants more information and more options. She really challenges them. I was happy with the doctor at [hospital], but my wife wanted to get other opinions and read everything she could online. She became my medical advocate that way.

I would describe [my partner] as my rock. She was great. The time I had pneumonia, I had checked the thermometer. It said 100 or something, and it went down and up. She didn’t trust the thermometer and got a new one from CVS. And that was the one that showed how high it really was.

Male partners of participants were more likely to be described as reactive. They largely responded with concern, care, and demonstrated a willingness to provide support. They were less likely to be described as taking on additional research about the disease, treatment options, or risk factors for COVID-19.

We had a lot of conversations about being afraid and what’s going to happen. He’s very supportive. He’ll be there for me. We have our estates planned out already, so I don’t think we talked about that. In the beginning, it was a lot of me being scared and crying and him being supportive. I think he was scared too, but he was there for me. He would say, “We’ll get through this. I’m here for you.”

While nearly all participants described their partners offering positive support, there were some counterexamples. These primarily came from participants who described significant preexisting stressors in their relationships prior to their diagnoses.

If [insufficient support] bothered me at all with anybody, it was probably just with my wife, because she’s the one that I’m closest with and can get mad at more than others. I remember her wanting me to do things and me saying I get tired more often. It’s almost like feeling like I have to remind her. She probably was thinking I don’t want to make a big deal of it, but I was thinking, “Do you not know what’s going on with me?”

Another participant, who had described taking part in an extramarital affair years before, noted that his marriage was still rocky at the time of his diagnosis. “[Ideally, she] would be talking a little more, be a little more responsive…my affair damaged her....I shouldn’t have done it.” This participant acknowledged that the infidelity had upended his marriage’s cohesion, which had not recovered by the time he was diagnosed.

Discussion

This manuscript focused on the health information communication, privacy management, and social support for people living with CLL. Participants described strategies for disclosing their diagnosis to family members and friends. Some participants wanted to share news of their diagnosis immediately; others described waiting to tell others. Reasons for sharing this information fell into 2 categories: participants currently desired or anticipated desiring support from others; and for information sharing. The latter was discussed in the context of disclosing health information to coworkers. Other participants explained that they didn’t want to share their CLL diagnosis because they didn’t want sympathy or excessive attention from people. Several participants chose not to disclose their diagnosis to protect their family members, particularly aging parents and young adult children. Some participants said they regretted telling people about their CLL diagnosis, wished they’d waited to tell people until they were going through treatment, or even told people sooner/before medical issues necessitated disclosure.

CPM theory¹⁷ was a useful framework for understanding these findings, especially because the nature of CLL requires active and ongoing privacy management. Participants of this study viewed their health information as their own and described being very intentional about how, with whom, where, and when they shared news of their CLL diagnosis. Along with initial disclosure, participants described how they continued to share information with family, friends, and coworkers. They discussed how they shared medical updates and treatment plans, as well as the importance of communicating clearly. To protect loved ones from unnecessary fear or concern, participants sometimes described choosing language carefully—for example, not using the words “cancer” or “leukemia.” CPM theory posits that managing private information is a lifelong endeavor,¹⁸ and because people with CLL tend to die with it, not of it,¹ this means that they will continually be tasked with deciding how to share their health information and how to reconcile disrupted privacy boundaries.

Limitations

The majority of participants were married or partnered. Therefore, the study lacks experiential differences for single individuals diagnosed with CLL, particularly regarding how and if support looks different for these individuals. Another limitation of the sample is the lack of racial and ethnic representation, as all participants identified as White. Self-selection bias is another identified limitation. Participants were recruited through CLL support groups, CLL-related websites, and informational listservs, so participants were receiving some level of emotional or informational support surrounding their diagnosis. Therefore, this study lacks the experiences of individuals who are less likely to seek support or who are not ready to share their experiences.

Implications

Evidence from participants demonstrates the positive benefits that community and group support (like CLL-specific support groups) can bring. This study also highlighted the importance of informational community support like Facebook groups. With this knowledge, nurses and physicians can better understand what supports might be helpful for their patients and families. Creating a resource list of local and regional CLL support groups and organizations would be a method for guiding CLL patients to social support. In addition, some participants described feeling less supported by partners when they were already grappling with relationship stressors prior to the CLL diagnosis. Partners and family caregivers are likely experiencing their own fears and concerns.² Nurses and physicians should inquire whether patients and their partners have enough support, and if not, refer them to mental healthcare providers. Finally, while this study focused on the perspectives of CLL patients as they made health-related communication decisions, future research might consider how family members and caregivers conceptualize their role in sharing their relatives’ health information.²³

Casting a wider net for participant recruitment will result in expanding the knowledge base of how oncology and mental healthcare providers may best support patients and family members.

As this is one of few studies that examine the psychosocial impacts of CLL, there are many avenues for further investigation. Future research into the experiences of people with marginalized racial and ethnic identities is necessary to provide a holistic view of CLL’s implications on social interactions. It is also important that concerted efforts are made to recruit participants who might not have sufficient psychosocial oncology support, as they may describe different experiences. Casting a wider net for participant recruitment will result in expanding the knowledge base of how oncology and mental healthcare providers may best support patients and family members.

Finally, results from this study may be transferable to other chronic health issues. As the prognoses for many cancers and other health issues (eg, diabetes, cardiovascular disease) potentially improve,^24-26 many patients will be tasked with ongoing communication management of their health. The CMP theory framework may provide greater insight into how those individuals communicate about their health, reconcile disrupted communication boundaries, and seek social support. This may help healthcare providers make recommendations for patients’ and families’ well-being.

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