Over the past 20 years or so there has been increasing attention given to adolescents and young adults with cancer. The focus of that interest has been on in-patient treatment and survivorship. In contrast, there has been little research that has focused exclusively on young adults with cancer whose disease trajectory puts them on a different path. The purpose of this research is to come to know and understand your experience and perspective as a young person who is facing a shortened life. Each of you has a story to tell and an important contribution to be made to our human understanding of what it is like to be young and dying.
If you are eligible and are willing to invest the time to share your experience, I honor you and thank you with my whole heart. We need to know about your experiences – what is going right, what is helpful, along with what is hurtful or unhelpful, or perhaps missing – in order to better serve other young adults who may find themselves in your situation.
Your contribution is important and valued! Existing studies have been somewhat limited in nature and diversity. It’s hoped that through online recruitment and an online survey with open-ended questions that a large and diverse number of individuals can be reached. A project like this hasn’t been done before, so you will be participating in cutting edge research.
As a Mom of a young adult who died of cancer, I can say with heart-felt care, “I am sorry for your loss, and the loss that will come to your family.” But for now you are here, and life is in you. Please share with us your world, your reality, and your experience.
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IRB No. 20-1007