AYACologne – Challenges, coping strategies and support needs of young adults with cancer in relation to life-threatening illness, dying and death
Project leader: Prof. Dr. Steffen Simon, Dr. Carolin Wilharm, Dr. Armin Tuchscherer
Duration: seit 2020
Projektbeschreibung
In Germany, approximately 16,500 young adults between the ages of 15 and 39 are diagnosed with cancer every year. Those affected, referred to in international literature as "adolescents and young adults" (AYAs), are suddenly confronted with their own mortality as a result of the disease. In a phase of life characterised by new beginnings and fresh starts, they suddenly find themselves in a life-threatening situation. This leads to severe psychological stress for AYAs and their families.
If the disease is no longer curable, AYAs often feel a pronounced sense of isolation between the other palliative care patients, who are usually significantly older, and their healthy or curatively treated peers. Compared to older patients, they have a higher symptom burden, struggle with their early death and often receive intensive therapies until shortly before the end of their lives.
Caring for young adults with advanced cancer also poses a particular challenge for the treatment team. They feel overwhelmed and unsure about how to discuss dying and death.
There is currently little evidence worldwide on the effects of these stresses. In addition, there are hardly any support services specifically aimed at AYAs with palliative care needs, their relatives and their caregivers.
Our research group focuses on the challenges faced by AYAs, their relatives and their caregivers with regard to life-threatening situations, dying and death, and the coping strategies they develop. Support needs are identified so that they can be better addressed.
Our goal is to develop a needs-based service offering in order to provide this special patient group with the best possible support in the future.
AYA C3: Challenges, coping strategies and support needs of relatives of young adults with cancer (AYAs), with a focus on life-threatening conditions
A qualitative interview study is being conducted with the closest relatives of AYAs who were treated at Cologne University Hospital and have now completed their treatment. The aim is to identify the challenges experienced by the closest relatives during the period of illness, the coping strategies they developed and the support needs that emerged in relation to the topics of life-threatening illness, dying and death.
AYA C4: Challenges and support needs of doctors when dealing with young adults with cancer (AYAs), with a focus on communication regarding ‘life-threatening conditions, dying and death’
The specific challenges that treating AYAs poses for doctors should be identified. In particular, the issue of communication regarding the topics of ‘life-threatening situations, dying and death’ should be addressed and the thoughts and feelings of doctors should be recorded. In addition, the need for support should be identified and approaches found to improve the situation of doctors and thus provide better medical care for AYAs.
AYA C1: The reality of life for young adults with cancer (DRKS00030276)
A qualitative interview study was conducted with AYAs treated at Cologne University Hospital on challenges, support needs and coping strategies relating to life-threatening conditions, dying and death. The interviews took place in the first 4 to 12 weeks after the initial diagnosis.
AYA C2: Challenges and needs of young adults with cancer (AYA) 2–5 years after diagnosis in relation to ‘life-threatening situations, dying and death’ (DRKS00030277)
Es wurde eine qualitative Interviewstudie mit an der Uniklinik Köln behandelten AYAs nach Abschluss ihrer Behandlung zu Herausforderungen, Unterstützungsbedarfen und Bewältigungsstrategien bezüglich der Themen Lebensbedrohlichkeit, Sterben und Tod durchgeführt. Die Interviews fanden 2 bis 5 Jahre nach Erstdiagnose statt.
Weiß M, Wilharm C, Hallek M, Voltz R, Pralong A, Simon ST, Tuchscherer A. Facing the cancer-related life threat as adolescent and young adult (AYA) after initial diagnosis: A qualitative interview study. Support Care Cancer. 2025 Apr 23;33(5):411. doi: 10.1007/s00520-025-09466-x. PMID: 40266371; PMCID: PMC12018638.
Wilharm C, Pralong A, Weiss M, Hallek M, Voltz R, Tuchscherer A, Simon ST. Facing life-threat during youth: a qualitative study on challenges, coping, and needs among adolescents and young adults with cancer. Support Care Cancer. 2024 Feb 22;32(3):179. doi: 10.1007/s00520-024-08370-0. PMID: 38383874; PMCID: PMC10881674.
Wilharm C, Pralong A, Weiß M, Blütgen S, Hallek M, Voltz R, Simon ST, Tuchscherer A. "The Most Important Thing is That You Are Not Left Alone"-A Qualitative Study of Challenges and Needs of Adolescents and Young Adults with Cancer. J Adolesc Young Adult Oncol. 2024 Dec;13(6):859-866. doi: 10.1089/jayao.2023.0158. Epub 2024 May 21. PMID: 38770689.
