More than a year ago, NCC brought together partners from across the state to form a task force focusing on survivorship and palliative care. That first meeting was a hit, and partners were thrilled to be working together on a portion of the cancer continuum that's so vital yet we felt was a weak point for our state. Shortly after, NCC staff and our counterpart at the State of Nevada Comprehensive Cancer Control Program attended the National Cancer Survivorship Research Conference in Washington D.C. and learned that Nevada wasn't behind at all. More research needs to be completed nationally to prove the effectiveness of certain programs and resources.
We came home from that trip with revived enthusiasm and a plan to gather our own data. How could we move foward with our survivorship and palliative care task force without knowing what gaps and barriers survivors in Nevada encounter? As we know, Nevada is a truly unique state, both in geography and health care landscape. So, we set out to talk to survivors and get the information straight from the source. Research and phone calls led us to the Vermont Cancer Survivors Focus Groups, a project completed 10 years prior, in 2006, that was the exact model we thought would work here in Nevada.
With help from task force members and the Vermonters themselves, we adapted the study and hosted the first focus group in late January in Reno. Three more groups, in Carson City, Elko, and Las Vegas, continued throughout the spring. With more than eight hours of audio transcripts in hand, we analyzed the data, identifying many topics that fit into larger theme categories. We didn't know what to expect. Would the experiences of those in Las Vegas be drastically different from those in Elko? What were the biggest challenges faced? What were the most important resources?
In the end, while there are differences in experiences of cancer survivors based on geography, age, and type of cancer, the bigger themes hold. The support of family and friends is vital. No one will ever find the answers to all of their questions in one place or at one time. And nurse navigators are universally appreciated.
The Nevada Cancer Survivor Focus Group Study report is complete and available for download here. It delves into those themes discussed covering topics ranging from anger at health care and financial distress to fitness, complementary therapies, and advance directives.
There were tears shed at each of the focus groups, more tears shed during the drafting of the report, and we anticipate a few more as it is read. It brings together important qualitative data, but more importantly it tells the story of cancer survivorship in survivors' own heartfelt words. We hope that beyond being an emotional read this report also becomes a helpful tool. It includes a list of recommendations that could help to improve the quality of life of survivors in Nevada, and hopefuly spurs more discussion and generates new ideas as well.
Special thanks to all of the survivors that participated in the focus groups...you are amazing.