Improving The Lives Of Those Affected By Brain Tumors
Recently ABC2 was generous enough to offer to post a blurb about a study I’m working on on their Facebook page. You might have seen it – I am Ashley Varner, a social work doctoral study studying the lived experience of family members living with and caring for someone with a primary malignant brain tumor.
Between 4 pm on a Tuesday and 4 am on a Wednesday morning more than 100 individuals responded to this request!
This remarkable show of interest moved me to tears. Clearly this research matters. Many of your emails were pages long, generously sharing your experience. About 80% of the emails I received in those first 12 hours were from individuals whose loved ones had died, yet you are still dedicated to improving the lives of those affected by brain tumors.
For this initial study, my research question is, “What is the lived experience of adult family members who live with an individual diagnosed with a primary malignant brain tumor?” This is a pilot, qualitative study using grounded theory. Thanks to your generosity, I have completed data collection and am now transcribing the interviews. I look forward to sharing the results. (If you responded and have not heard from me, please know I am responding to each email – it’s just taking a little time to work my way through the dozens and dozens of responses I received!)
But wait! There’s more to come!
If you are still interested in a year or so, my dissertation will also focus on those who have cared or are caring for someone with a primary malignant brain tumor. I am fortunate enough to have received a grant from the American Cancer Society to pursue this research. If you’d like to be put on a list of people to be contacted when I begin this research study please email me at firstname.lastname@example.org.
Why This Topic of Research?
Some of you asked in your emails what made me pick this topic. I came to it honestly, but not through family experience. I’ve been an oncology social worker for more than 15 years. (For those of you who have never heard of an oncology social worker, we are a growing profession who focus on the emotional and social well-being of those affected by cancer, both those who are diagnosed and those who care about someone with a cancer diagnosis.) I have had the incredible privilege throughout my career of working with many people affected by malignant brain tumors. As most of you know, it is a different experience from other kinds of cancer. I believe there is a tremendous need to understand the experience of those caring for someone with a brain tumor in order to develop programs and interventions that will improve the experience for both those who are diagnosed and those who care about them. Of course we need to find a cure, but until we find a cure, we also need to find ways to improve quality of life for those living the experience.
A Shameless Plug
If you are in the Washington, D.C. area and affected by a brain tumor, please join our ABC2 sponsored support group on the 1st Thursday of every month at George Washington University’s Medical Faculty Associates. For more information contact me at email@example.com