Section 4 of 8
Research question #1: What prolongs the appraisal interval (i.e., time from noticing bodily change to perceiving a need for consultation with a healthcare provider)?
Natasha C. Allard, Elizabeth G. Bouchard, Jennifer S. Ford, Thomas Hugh Feeley, Denise Rokitka, and Heather Orom · about 6 minutes
Theme 1: Most young adults attributed ongoing but vague symptoms to mental and physical stress stemming from work, school, major life changes, or their unhealthy behaviors. Nearly all young adults waited more than one month (usually several months, sometimes even years) to seek care after symptom awareness: “I had bleeding after sex and bleeding between menstrual cycles for a year [before I told my doctor].” [Participant 17, diagnosed at 35, cervical cancer] The most common reason for this delay was believing symptoms were caused by stressors; many perceived low urgency for consulting a healthcare provider because they assumed that symptoms would stop when their stress abated, life ‘calmed down’, or they changed their behavior: “It was like an hour commute every day, back and forth. And it was like, a lot of stress so we kind of chalked up symptoms to that for a long time.” [Participant 14, diagnosed at 24, brain cancer] A few participants recalled the exact time span or event in which they expected symptoms to dissipate, for example: “I had been experiencing fatigue for several months and kind of ignored it. I had four months to go until graduation and I figured I could just push through.” [Participant 1, diagnosed at 35, leukemia] The stressors that participants described were common for young adults, including starting college, beginning a new job, moving homes, marriage, financial autonomy, and growing a family.
Several participants believed it was expected for stress to cause physical issues: “But I remembered that during orientation they told us that freshmen year is the tiredest you will ever be.” [Participant 5, diagnosed at 20, sarcoma] Some participants attributed symptoms to frequent alcohol consumption, late night partying and studying, low water intake, and lack of physical activity:I was just waking up super drenched in sweat, like, more than is appropriate. I was really, really, really tired a lot. But I was also at an age where I was drinking … ‘Oh, maybe I’m just, like, living too hard.’_ [Participant 12, diagnosed at 24, leukemia]_
Theme 2: Some participants dismissed symptoms as nonserious based on their perceived expectations of “normal” physical issues occurring to people like themselves. A few participants living in colder climates (i.e., Northeast and Midwest states) did not perceive a need for healthcare, even when symptoms such as dry skin, sinus infections, rashes and nose bleeds continued for months or years, because they believed they were caused by the weather and would resolve with warmer seasons or climates:The Boston winter made my skin dry out. And then I just started getting more [red patches] each winter. And so those things I noticed, but I never thought to bring them up to the doctor._ [Participant 30, diagnosed at 28, lymphoma]_
For a few female participants, beliefs or lack of knowledge about reproductive physiology influenced their interpretation of symptoms. One young woman thought it was common for people to grow lumps or feel pain during their menstrual cycle. Another had unexpected bleeding, but perceived there was considerable variability in normal reproductive functioning: “I just kind of, felt like maybe my body was built differently.” [Participant 17, diagnosed at 35, cervical cancer].
Theme 3: Many young adults believed bodily changes to be low threat, based on perceived low susceptibility for serious diseases or lack of knowledge about cancer symptoms. These participants explained characteristics they believed protected them from serious diseases such as cancer, including their age, health status, lack of family history, and practicing healthy behaviors: “I assumed I’m a healthy guy, [it’s just] a bug.” [Participant 4, diagnosed at 28, leukemia] A few described not suspecting cancer because they perceived themselves engaging in healthy behaviors including not smoking, drinking alcohol or tanning, or eating a healthy diet and exercising regularly:Well, especially about skin cancer, I expected it to be like, sun related. Like, I’ve never tanned. I’m young, I’m healthy, I’m like, a runner, I love to exercise, I’m not eating fast food, I don’t tan, surely it’s not a problem. [Participant 11, diagnosed at 37, melanoma]
Some participants believed symptoms were low threat due to insufficient cancer symptom knowledge, such as one participant who experienced bladder infections, but this did not align with their knowledge of what types of symptoms warrant care: “It wasn’t like I found a lump in my breast. You know what I mean?” [Participant 25, diagnosed at 27, ovarian cancer] Another dismissed a breast lump as nonserious due to not having a family history: “There’s not been any history in my family…I know a part of my mind did go to it being cancerous, but I felt like, ‘Nah, that’s… that’s not possible.’ So I just like, waved it off.”_ [Participant 6, diagnosed at 30, breast cancer]._
Theme 4: Most participants sought information online about their symptoms as a method for avoiding professional medical evaluation while managing their low tolerance for uncertainty. Participants who sought online information to help them self-appraise and self-manage symptoms described a long appraisal interval. Many recall conducting an online information search using the using Google search engine to look for information on their symptoms, e.g., “blood when passing gas_” [Participant 24, diagnosed at 39, colorectal cancer]_ and adding in personal attributes “lumps on back, female 30 s.” [Participant 11, diagnosed at 37, melanoma] Others searched for specific causes of their symptoms e.g., “What would cause inflammation in your throat?’” [Participant 30, diagnosed at 28, lymphoma]. A few Googled symptom management tactics, such as, “How to deal with dry skin on your face.” [Participant 30, diagnosed at 28, lymphoma].
Many participants who performed a Google search found information that they feel reduced their urgency for seeking care by offering a nonserious explanation or a method for alleviating symptoms. Some were guided to websites with at-home symptom management treatments. Others encountered webpages with an overwhelming and unhelpful list of potential causes— “It could be like, either tension headaches, or it could be a brain tumor.” [Participant 7, diagnosed at 27, brain cancer]— and were inclined to trust the less severe attributions: “Pretty much all I found was like, ‘This is a somewhat nonurgent issue.’” [Participant 5, diagnosed at 20, sarcoma].
Theme 5: Young adults who did not experience a prolonged appraisal interval often had beneficial social network connections who implored seeking medical care. Despite having low self-perceived urgency for seeking care, some participants experienced shorter appraisal intervals because they disclosed their symptoms to family, friends, and co-workers. A few young adults described an increase in their urgency for contacting a provider based on a desire to comfort or please loved ones who were pressing the need for evaluation: “[My wife] definitely kept pushing me to continue going to the doctor because I’ve never had anything like that wrong with me, you know?” [Participant 9, diagnosed at 37, leukemia] Other participants benefitted from social capital by receiving informal symptom evaluations from family members who worked the in medical field. For example, one participant’s mom worked at a cancer center:I had also called my mom, because you know, she worked at cancer centers. And I was like, “Does this sound like something?” And yeah, she was like, mad at me [for not going to the doctor sooner], you know? [Participant 27, diagnosed at 34, leukemia]