Supporting Adolescents and Young Adults (AYA) to Cope With Cancer-Related Mortality in the Acute Phase Post-Diagnosis: A Qualitative Interview Study

Background Supporting Adolescents and Young Adults (AYAs) with cancer regarding the life-threatening nature of their disease states a challenge for clinicians [1] [2] [3] [4] [5]. There is lack of evidence when and in what form the need to discuss mortality becomes significant to AYAs [5]. The aim of this study is to derive implications for clinical practice from the perspective of AYAs shortly after initial diagnosis.

Methods We conducted a qualitative interview study using a semi-structured interview guide with AYAs who had been diagnosed with cancer 4−12 weeks prior to participation. The interviews were transcribed verbatim, and the transcripts were analyzed using Framework Analysis.

Results Eighteen patients (7 females, 11 males, 27,2±5,3 years) were included in the study. We identified challenges that apply to the majority of AYAs. The sudden confrontation with their mortality due to a potentially life-threatening illness stands in stark contrast to the feeling of youthful invincibility and the certainty that they still have their whole lives ahead of them. The unpredictability of the treatment outcome fuels this uncertainty even more. However, we found differing moments at which the topic mortality becomes relevant. One of the biggest concerns of the AYAs is burdening their relatives by their disease and the associated life-threat. Many AYAs seek to protect their next of kin by adopting a carefree façade and deliberately avoiding conversations about mortality. At the same time, many have a great need for reassurance. Thus, ensuring support options for AYAs as well as for their relatives is of great importance. The most important coping strategy in dealing with mortality is hope. All AYAs have the goal of recovery at the time of the study. The attitude of Health Care Professionals (HCPs), age-appropriate, individualized education and treatment progress are important factors to this. We observed inter-individual differences in how AYAs deal with mortality. Some stress how thoughts on mortality cost energy that is much needed to endure the therapy, making their key strategy repression, and not wanting to communicate. At the same time, some AYAs express the wish for a normalization of communication about mortality as this approach reduces the horror around death and makes it seem less out of the ordinary. Accordingly, it is important for HCPs to respect and value boundaries, yet at the same time not to miss out on those AYAs who have a need for exchange.

Conclusion Supporting AYAs in dealing with mortality is complex and varies across individuals. HCPs play a central role as supporting factor and we were able to derive valuable suggestions for their everyday clinical practice. Still, further studies with increased sample sizes are needed to explore this challenging issue.

Publikationsverlauf

Artikel online veröffentlicht:
26. August 2024

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