Abstract
ABSTRACTAdolescents and young adults (AYAs) with cancer are a vulnerable and underserved population. AYAs’ cancer survivorship is complicated by physical and psychosocial late effects which requires long-term follow-up. Connectedness with healthcare providers (HCPs) is a protective factor that may improve long-term follow-up behaviours of AYAs. However, little is known about AYAs’ experiences connecting with HCPs. The purpose of this study was to describe AYA cancer survivors’ experiences connecting with HCPs. This empirical phenomenological study interviewed nine AYA cancer survivors diagnosed during adolescence. Individual interviews were conducted and analysed using an adapted Colaizzi approach. The essential structure reveals that AYAs begin their experience of connectedness with a sense of disconnectedness prior to treatment. The diagnosis is a period of confusion and emotional turmoil that interfere with the AYAs’ ability to connect. When AYAs come to accept their illness and gain familiarity with the environment, they then put forth an effort to connect with HCPs. Although it takes time for AYAs to reciprocate efforts to connect, HCPs should be aware that AYAs carefully assess and make judgments about whether or not HCPs can be trusted. Findings raise awareness of the actions and behaviours of HCPs that hinder connectedness, and targeted in future research.
Highlights
Adolescents and young adults (AYAs) with cancer have shown strikingly less improvement in treatment outcomes than either younger or older cancer patients, even though there has been progress in the treatment of childhood cancer over the past four decades (Bleyer et al, 2017)
This study explored the lived experience of AYAs connecting with healthcare providers (HCPs)
Our findings revealed that AYAs’ experiences of connecting with HCPs are delicate experiences that can be complicated by several factors, especially prior to the cancer diagnosis
Summary
Adolescents and young adults (AYAs) (ages 15–29 years) with cancer have shown strikingly less improvement in treatment outcomes than either younger or older cancer patients, even though there has been progress in the treatment of childhood cancer over the past four decades (Bleyer et al, 2017). Researchers estimate that as many as two-thirds of young adult cancer survivors have at least one late effect, with about one-third having serious or life-threatening complications (Oeffinger & Wallace, 2006). Many of these late effects remain dormant for decades and require careful screening and monitoring throughout life. Recent studies have indicated that the cancer screening behaviours and medical follow-up practices of AYA cancer survivors are less than optimal (Oeffinger et al, 2004; Oeffinger & Wallace, 2006)
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