“Double awareness”—adolescents and young adults coping with an uncertain or poor cancer prognosis: A qualitative study

Abstract

IntroductionAdolescents and young adults with an uncertain or poor cancer prognosis (UPCP) are confronted with ongoing and unique age-specific challenges, which forms an enormous burden. To date, little is known about the way AYAs living with a UPCP cope with their situation. Therefore, this study explores how AYAs with a UPCP cope with the daily challenges of their disease.MethodWe conducted semi-structured in-depth interviews among AYAs with a UPCP. Patients of the three AYA subgroups were interviewed (traditional survivors, new survivors, low-grade glioma survivors), since we expected different coping strategies among these subgroups. Interviews were analyzed using elements of the Grounded Theory by Corbin and Strauss. AYA patients were actively involved as research partners.ResultsIn total 46 AYAs with UPCP participated, they were on average 33.4 years old (age range 23–44) and most of them were woman (63%). Most common tumor types were low-grade gliomas (16), sarcomas (7), breast cancers (6) and lung cancers (6). We identified seven coping strategies in order to reduce the suffering from the experienced challenges: (1) minimizing impact of cancer, (2) taking and seeking control, (3) coming to terms, (4) being positive, (5) seeking and receiving support, (6) carpe diem and (7) being consciously alive.ConclusionThis study found seven coping strategies around the concept of ‘double awareness’ and showcases that AYAs are able to actively cope with their disease but prefer to actively choose life over illness. The findings call for CALM therapy and informal AYA support meetings to support this group to cope well with their disease.

A qualitative study on redefining normality in relatives of patients with advanced cancer

“…This conception is also in line with the concept of "Double Awareness" as described by Burgers et al in their study on adolescents and young adults (AYAs) with uncertain or poor cancer prognosis. 33 While coping with their cancer, AYAs walk on two paths at the same time: "one path focusing on engagement in life and one path focusing on the reality of premature death." This is influenced by treatment regimens and disease progression.…”

What patients with advanced cancer experience as helpful in navigating their life with a long-term response: a qualitative study

“…The duality of living with an uncertain cancer prognosis has previously been found in several studies among advanced cancer patients. These studies described, for example, a double awareness, where patients are simultaneously engaging with life while facing the reality of death [ 17 ]. The duality has also been described as a contrast between patients’ desire to live normally while also being aware of the possibility of death [ 18 , 19 ] a dialectical movement between existential suffering and existential health [ 20 ] and as living in the tension between life and death [ 21 ].…”

Development of Quality of Life in Adolescents and Young Adults With Cancer Using a Patient Support Smartphone App: Prepost Interventional Study

“…Adolescents and young adults in cancer treatment are likely to transition from experiencing initial crisis and loss of control at diagnosis to accepting their diagnosis and situation. An increase in awareness and use of coping strategies supports this transition in this patient group [ 33 ].…”