![]() Hence, gaps remain in understanding how best to support decision-making amongst AYA during the time between diagnosis and initiation of front-line treatment.Īs commentators have observed, late adolescence and young adulthood is a time when significant physical, emotional and cognitive changes can occur. Limited attention has been paid to AYA’s experiences and support needs in the immediate aftermath of diagnosis, despite this being the time when critical, and potentially life-changing, decisions about cancer treatments are made. When diagnosis has been the focus of AYA research, this work has primarily been undertaken to understand (and help address) delays to diagnosing cancer (e.g. This work has been undertaken to identify challenges and care needs that may be specific to this age group and support development of age-appropriate cancer services. In seeking to improve information-giving and involvement in treatment-related decision-making at diagnosis, care should be taken not to delegitimize the preference of many AYA for a directive approach from trusted clinicians.Ī growing body of research has looked at the experiences and views of adolescents and young adults (AYA) with cancer. It raises questions about the direct value, to AYA, of approaches that aim to promote decision-making by improving understanding and recall of information, though such approaches may be of value to caregivers. Our study highlights the challenging context in which AYA are confronted with decisions about front-line treatment, and reveals how their responses make it hard to ensure their decisions are fully informed. However, in seeking to ensure AYA received the best treatment, these individuals had conflicting priorities and information needs. Parents/caregivers attempted to compensate for AYA’s limited engagement with treatment-relevant information. Even when charged with decisions about trial participation, AYA reported welcoming a strong health professional steer. AYA seldom indicated wanting to make choices about front-line treatment, with most preferring to defer decisions to health professionals. Most reported seeing information about short-term side-effects of treatment as having limited relevance to their recovery-focused outlook at that time. After referral to a specialist cancer unit, many AYA described quickly transitioning to a calm and pragmatic mind-set, and wanting to commence treatment at the earliest opportunity. Distress and acceleration in clinical activity following diagnosis could further impede the absorption of treatment-relevant information. Most AYA described being extremely unwell by the time of diagnosis and, consequently, experiencing difficulties processing the news. ![]() ![]() Analysis focused on the identification and description of explanatory themes. Interviews were undertaken with 18 AYA diagnosed, or re-diagnosed, with cancer when aged 16–24 years, and 15 parents/caregivers. We explored AYA’s and caregivers’ experiences of, and views about, making treatment and trial participation decisions following a cancer diagnosis, in order to understand, and help facilitate, informed treatment decision-making in this age group. Limited attention has been paid to adolescents and young adults’ (AYA's) experiences in the aftermath of a cancer diagnosis, despite this being a time when potentially life-changing decisions are made.
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