Like Prisoners in a War Camp: Adolescents and Young Adult Cancer Survivors’ Perspectives of Disconnectedness from Healthcare Providers during Cancer Treatment

Abstract

Background: Adolescent/young adult (AYA) cancer survivors experience greater psychosocial distress than younger or older adults. To address their psychosocial distress, it is important that healthcare providers (HCPs) foster connectedness with AYAs; however, some HCPs' words and behaviors may actually create a sense of disconnectedness with AYAs. Objective: The aim of this study was to describe AYA cancer survivors' experiences of disconnectedness from HCPs during cancer treatment. Methods: This empirical phenomenological study sample included 9 AYA cancer survivors (aged 20-23 years) diagnosed during adolescence. In-person interviews were conducted using a broad data-generating question and analyzed using an adapted Colaizzi's method. Results: Healthcare providers' behaviors that create disconnectedness include (1) exhibiting a lack of appreciation for AYAs' personhood, (2) inflicting unnecessary harm or discomfort, (3) being apathetic of needs and preferences, (4) treating AYAs like they have minimal rights, (5) speaking in a patronizing manner, (6) ignoring their requests, and (7) failing to be vigilant for basic needs. When AYAs experience disconnectedness, they feel dehumanized, powerless, and a lack of self-determination. Conclusion: Findings highlight disturbing HCP behaviors that create AYA disconnectedness. Despite generally feeling connected to HCPs, AYA cancer survivors' experiences of disconnectedness leave lingering feelings of anger and resentment, even after treatment ends. Preventing disconnectedness behaviors must be a priority. Implications for practice: AYA cancer survivors' can benefit from having the opportunity to share their experiences of disconnectedness and having the chance to be autonomous in their care. Bringing awareness to HCPs about what behaviors cause disconnectedness is essential in preventing the behaviors.