Publications by authors named "Niels C G L Harthoorn"
Article Synopsis
- * Through interviews with 46 AYAs, four key pillars for a positive healthcare experience were identified: trust, tailored communication, an empathetic attitude, and proactive care.
- * The findings suggest that both age-specific issues and those related to the cancer prognosis must be addressed in clinical practice to improve care, indicating a need for better training and resources for healthcare professionals while empowering AYAs in managing their health.
Article Synopsis
- The study explores the importance of involving adolescents and young adults (AYA) with uncertain and poor cancer prognoses (UPCP) as partners in health research, documenting their experiences and the impact of their involvement.* -
- Six AYAs participated in various research roles, such as initiating study topics, conducting interviews, and analyzing data, ensuring the relevance of the research to their peers.* -
- Involving AYAs in research benefited both the study outcomes and the participants, who felt valued and understood, while also presenting challenges that researchers should proactively address.*
Article Synopsis
- A lot of young adults aged 18-39 with serious cancer are living longer because of new treatments, but they still face many daily challenges.
- Researchers interviewed 46 young cancer patients to understand their experiences and found that many feel inferior, lonely, and uncertain about the future.
- The study aims to improve care for these patients by focusing on their emotional struggles and how they see themselves in life.
A qualitative study on the involvement of adolescents and young adults (AYAs) with cancer during multiple research phases: "plan, structure, and discuss".
Camila Rosalinde van Ham Vivian Wilhelmina Gerarda Burgers Sophia Helena Eva Sleeman Annemiek Dickhout Niels Christiaan Gerardus Laurus Harthoorn
Res Involv Engagem
July 2022
Background: Including the lived experience of patients in research is important to improve the quality and outcomes of cancer studies. It is challenging to include adolescents and young adults (AYAs) cancer patients in studies and this accounts even more for AYAs with an uncertain and/or poor prognosis (UPCP). Little is known about involving these AYAs in scientific research.
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