Objective
Considering the issue of endometrial cancer, the role of social support in the experiences of Black women has not been explored. We share our process of stakeholder engagement that assessed the experiences of Black women with endometrial cancer, with attention to both the barriers and the facilitators of support.
Study Design
We conducted 2 stakeholder engagement-focus groups with patient survivors. The participants were recruited from the Endometrial Cancer Action Network for African Americans peer education program and survivor community. They had to carry a diagnosis of endometrial cancer and identify as Black or African-American. The focus group sessions were facilitated through interactive audiovisual conferences, which were recorded and transcribed. The transcripts were qualitatively analyzed via close reading and memo notes, employing Braun and Clarke thematic analysis techniques to generate the initial set of codes within the framework of social support. The initial codes were identified to organize the data. Using an inductive approach, the codes were grouped into subthemes. Latent thematic analysis was used to identify and name the underlying broad themes.
Results
We completed 2 two-hour focus groups, each with 5 participants. We classified the responses into 3 main themes ( Table ). The first major theme was the negative consequences of lacking support. When asked to describe the effects of a lack of support, the participants responded with anecdotes that exemplified the emotional consequences of lacking certain types of support. A lack of informational support resulted in significant uncertainty and fear. Lacking emotional support from expected sources resulted in loneliness and anger. Lacking physical or instrumental support resulted in a sense of loss and financial stress. The second major theme that we identified was resilience. Resilience, defined as an individual’s ability to maintain or restore relatively stable psychological and physical functioning when confronted with stressful life events and adversities, was salient in the described experiences of our participants. This resilience manifested itself as agency at the time of diagnosis, transformation that occurred through the course of treatment, and responsibility that came with being a survivor. The third major theme was established external factors in maintaining support. The medical team provided both informational and instrumental support that was considered valuable, and it included being accessible, approachable, engaging in shared decision making, and providing mental health and nutrition resources. In general, families and friends provided emotional and instrumental support. Several patients shared about the support they had from preexisting social networks (online or in person). This ranged from family who encouraged physical activity, to friends who provided food and water without being asked.
| Theme 1: lacking support—emotional burdens | |
|---|---|
| Uncertainty, fear, finances | |
| Uncertainty of physicians, diagnosis, and treatment | “I didn’t even know what an oncologist was” |
| “I didn’t know what stage I was” | |
| “The first time I found about (endometrial cancer) was when I Googled it” | |
| “I was just so afraid with the chemotherapy with my veins and the side effects” | |
| “I didn’t know what brachy was” | |
| Financial stressors (copays, transportation, utilities) | “They want their copay from the last time that you were there… It’s very expensive to be sick” |
| “Every time you go you got to go pay for your parking” | |
| “Like the refrigerator breaks or washer and dryer breaks or whatever… That’s a major expense” | |
| Fear in survivorship | “Scanxieties” |
| “I had a sense of fear because I knew where I had been. I was just still so close to it” | |
| “You still feel vulnerable” | |
| “You almost fear the rejection of someone feeling that way towards you (the cancer could return)” | |
| Loneliness | |
| Self-isolation, others not understanding | “There wasn’t anyone to talk to” |
| Unmet expectations from social networks | “I have high expectations… because of my own ability to always be there” |
| “Why didn’t you call me or visit” | |
| “…the people around me that should be supportive were not as supportive as I thought they should be” | |
| “I still felt like I didn’t have support from my church. That bothered me a great deal.” | |
| “(I had a) sense of helplessness of not having the family support, the religious support that I should have had” | |
| Sense of loss | |
| Loss of health and physical strength | “I had been so healthy my entire life” |
| “I (had) inner loneliness, of pain not being able to be me, not being able to move like I want to move” | |
| “It (radiation) became physically disabling” | |
| “In 3 months I had no muscle tone…it is very frustrating when you can’t even lift your purse; everything just feels so heavy” | |
| “oh my gosh, my body, what happened to it” | |
| Loss of uterus orwomanhood | “Everything is gone” |
| Emotional exhaustion | “I was drained from all the emotion… from all the preparing yourself to have to go through the cycle of chemotherapy” |
| “I had been through so many battles, financial, spiritual, you name it” | |
| “I was drained from the hospital stay” | |
| Loss of medical support after upfront treatment | “You get all this attention when you’re in treatment. You have direct contact with your doctors, or nurses. And then you have a huge group of support people that are around you during your treatment. And then it’s like falling off a cliff” |
| Anger | |
| Anger at poor quality of care | “She was going to the doctors, she’s asking questions, they’re saying, you’re fine, it’s just menopause…she didn’t have to die” |
| “This man had me booked for surgery in 15 min and checked me for exam, 15 min. That’s how fast he’s talking, and it was horrible” | |
| Anger at diagnosis | “You do get angry. I know life isn’t fair, but jeez” |
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