Laura Fisher Brown and Dr. Patricia Rushton, College of Nursing
This research project has been such a growing experience for me. When I applied for my first grant in October of 2007, I had no idea that I would have gained so much from the opportunity to do undergraduate research. It has been a little over a year since I have started performing research in depth on my topic and it has been full of surprises, from both the actual process of research as well as the outcomes of my study. I have learned much about available support programs for cancer patients, the factors contributing to quality of life in patients battling cancer, and the effect family support plays on these patients.
My goals in undertaking this project were manifold. The first was to compile a summary of the most common and burdening stressors of those patients with a cancer diagnosis. Next I desired to see how these stressors affect the quality of life for these patients. Once these stressors and their effects were determined, I could accomplish my third goal, to examine the role family plays in cancer patient coping and how family support impacts quality of life. I could then use these findings to promote greater provision of holistic care towards patients dealing with a diagnosis of cancer, especially for those lacking a solid family support system.
To accomplish these goals, I began by doing extensive research in the field of cancer quality of life and coping. I was aware that before I could begin research on examining the effects of family support on cancer patient quality of life, I had to first define for myself what quality of life really was and what factors contributed to it. After examining over twenty different instruments measuring quality of life and reading a vast collection of reports on the subject, I concluded that quality of life included aspects of physical and mental health, living conditions (housing, family, safety), social interaction, spirituality, opportunity for education/recreation/pleasure, and stability/freedom of situation. I came to the conclusion that quality of life involved all aspects of living, not just health, and all these aspects are intertwined.
Once I had defined quality of life, I could finally sit down and develop my own tools. I created both a demographic survey and a quality of life questionnaire. It was important to create a demographic survey along with a quality of life questionnaire. The demographic survey proved valuable in eliminating confounding aspects of the study. The quality of life questionnaire was more difficult to create. I provided questions to cover all the elements of quality of life and coping that I had deemed important. I struggled for some time to make a balanced and useful questionnaire that I thought would fit my goals and purposes. The questionnaire also had to be easily adapted to fit to the family member so they too could evaluate the quality of life of their cancer patient family member. This questionnaire developing stage of my research was invaluable to me, as I got the opportunity to attempt to think as a cancer patient and the things that they might struggle with daily and to come up with an empathetic and appropriate way to evaluate them.
After the development of my tools, including a consent form and letter to send out to prospective participants, I was required to obtain IRB approval from both BYU and the sites I would be gathering my contacts from. I never expected that this would be the very hardest stage of my research. I struggled for months to gather the information and tools that all the different sites desired. Frustration mounted as I was forced to climb over barrier after barrier. I would have turned back if it had not been for my wonderful mentor, whose encouragement assisted me in pushing onward. Finally, I was able to find a clinic in Provo, the Central Utah Clinic, that would be willing to help in my research. Packets were swiftly compiled and passed out. It took many months to get the packets back to me and a few more to get the data compiled and interpreted by the BYU Statistics Department.
In the end, my data taught me some very valuable things. My twelve participants made up a very diverse group in regards to their marital status, sex, age, family situation, diagnosis length, and treatment being received, yet despite all of these differences, all of them scored low on the Quality of Life questionnaire. This showed me just how complicated and toiling the disease of cancer is. No matter how severe, it affects every aspect of life. As for family support, this did not seem to statistically affect their scores. One thing I did find interesting though, was that in every case but one, the family member or friend rated the patient’s quality of life much higher than the patient did. The fact that these support systems considered that patient quality of life being an average of 12% higher than the patient rated it to be shows that people are not truly understanding what these patients are suffering. For one reason or another, the patient’s needs are not being understood. This just proves once again the importance of having a strong support system in place so that patient can feel understood in their time of greatest need.
This research has been such a growing experience for me. The knowledge that I have gained about the research process, from formulating the research steps and tools to working with health professionals to accomplish the research, has been tremendous. I have learned how to study scholarly papers on a subject. I have discovered how to go about proposing research. I have learned the difficult task of gathering a pool of participants that will comply to the task at hand. I have had the opportunity to present my research at the Annual Fall Conference of the Intermountain Chapter of the Oncology Nursing Society this past September and network with oncology nurses around the state. I also presenting a poster that I created at the BYU Nursing Research Conference last November. Through the ORCA office, I was also able to present my research to many of our generous donors last year in the Hinckley Alumni Center and thank them for their support. My research also assisted me in finding a nursing job after graduation at one of the most recognized hospitals in the nation because they saw my interest in research and knew that I would be a valuable addition to their team. I believe that my enthusiasm for my research has spread to others. Many nurses have requested that I email my results to them or repeat my research on their units so that they can use this research for a premise to further support groups on their units. This will help to accomplish my greatest goal in starting this research, to promote greater provision of holistic care towards cancer patients lacking a solid family support system.
Much research has yet to be done on this topic. One can see from studying my data and the data of others that have researched along similar lines, support of the cancer patient is still a great mystery. More people must be educated about how to assist cancer patients in more ways than just managing symptoms. Programs must be created that can provide patients with these needs. With further investigation into family support of cancer patients, there is a greater hope that these patients can receive adequate care to increase their quality of life.