“Every day is just kind of weighing my options.” Perspectives of young adult cancer survivors dealing with the uncertainty of the COVID-19 global pandemic

Abstract

Purpose We explored adolescent and young adult cancer survivor (AYA) experiences with COVID-19 to understand the impact of living through a pandemic, unmet needs, and coping strategies. Methods AYAs were recruited nationally, completed an online survey, and attended one of six online focus groups. We used qualitative content analysis to analyze focus group data. Results Thirty-nine AYAs completed the survey, and 24 also participated in the focus groups. In the survey, AYAs responded that COVID-19 increased anxiety about their health or their family’s health, feelings of isolation, and worries about job security. Overarching focus group themes included AYA behavioral responses to the pandemic similar to their peers, the added burden of cancer, and unexpected advantages of a cancer history. When discussing the added burden of cancer, subthemes included difficulties and delays in medical care, mental health stressors, and compounding uncertainty. Unexpected advantages of a cancer history included relying on coping strategies developed during active treatment and resiliency from practicing social distancing during treatment. Conclusions AYAs have struggled in the early pandemic in ways similar to their peers but with compounding uncertainty regarding their unknown risk due to cancer history. Healthcare providers and systems can better support AYAs by providing additional psychosocial supports, developing strategies to triage good candidates for telehealth, and providing information about cancer survivor-specific risks for COVID-19. Implications for Cancer Survivors Our findings indicate a need for psychosocial supports that address managing anxiety and uncertainty. AYAs may be able to draw on their cancer experiences to navigate the COVID-19 pandemic. Supplementary Information The online version contains supplementary material available at 10.1007/s11764-021-01069-9.

The psychosocial and emotional experiences of cancer patients during the COVID-19 pandemic: A systematic review

“…Studies used many different outcome measures in their cross-sectional designs ( Table 1 ). Six studies employed a qualitative methodology [23] , [24] , [25] , [26] , [27] , [28] and four study used mixed methods [29] , [30] , [31] , [32] .…”

The Perceived Impact of COVID-19 on the Mental Health Status of Adolescent and Young Adult Survivors of Childhood Cancer and the Development of a Knowledge Translation Tool to Support Their Information Needs

“…For some, their cancer experience may serve as a buffer against some of the risks of the pandemic. A qualitative study conducted by Shay et al (2021) with AYA patients and survivors identified perceived unexpected advantage of a cancer history during the early stages of the global pandemic. Specifically, AYA survivors relied on strategies that they previously used to cope with their cancer and treatment.…”

“…AYA survivors may be at a greater risk of mental health concerns given their health history and perceived vulnerabilities. Indeed, a mixed-methods study conducted in the United States at the outset of the pandemic found that AYA survivors reported a high level of anxiety regarding their health and that of their family, feelings of isolation, and worries about employment status (Shay et al, 2021). In another international study comprised of AYA patients and survivors, more than 50% of respondents expressed an interest for information tailored to their needs in coping with the pandemic (Košir et al, 2020).…”

“Now Everybody Is Thinking About Things Like That.” Young Adult Cancer Survivors Reimagining Work During the COVID-19 Pandemic

“…Potential drivers of observed increases in psychological distress may be related to lifestyle changes, including social isolation, economic disruptions, and uncertainty about the future. For YACS, this may be heightened with the pandemic’s effects on cancer care delivery (e.g., diagnostic or treatment delays, drug shortages, or move to telehealth appointments) and fear of increased susceptibility to severe COVID-19 among cancer survivors (Nekhlyudov et al, 2020; Saini et al, 2020; Shay et al, 2021). Research is needed on YACS’ risk and resilience factors that could ultimately impact future health and QOL.…”

“…Nearly 84,000 young adults (YAs; ages 20–39 at diagnosis) are diagnosed with cancer each year in the United States (Miller et al, 2020). Even before the pandemic, YA cancer survivors (YACS) faced a “new normal” related to pre- and post-cancer diagnosis; the pandemic brought another experience of uncertainty early in the life course (Donovan et al, 2015; Shay et al, 2021). YAs represent a unique population of cancer survivors, often in-between pediatric and adult oncology care settings (Janardan & Wechsler, 2021; Zebrack et al, 2014), and face a significant health crisis at a time marked by meeting major personal, school, and work milestones (D’Agostino et al, 2011).…”