Charli as a teacher...
About two years ago I was contacted by a nursing teacher at a University in PA regarding our blog. She found our blog and wanted to use our journey and experiences to help teach nursing students in her program. She felt that by introducing these students to life through the parent and patients eyes, they would be better providers. I think she is right.
She used a total 9 blogs and went back to the beginning of each story. She really got to know our kids, and so did her students. The project was recently finished and I got a final report back from her and her views on the experience through her dissertation.
I am humbled beyond words to have been able to participate in something like this. Charli has officially gone beyond anything we ever imagined. Through Charli's experience medical professionals have been and will be educated in a NEW way...resulting in better care for those they will serve down the road. What an amazing legacy for Charli to be a part of.
The following are pieces of the letter I received from the professor recently...
At long last, I am happy to share the findings of the nursing study of your blog about your child’s cancer. I began reading your writing in the Fall of 2009 and completed the analysis in December 2010. The research was meant to explore your blog and others for important elements of the cancer care your child received and to attend in a meaningful way to your written expression of the experience.
I learned a great deal from reading your work and the comments you received. Since life changed so much over the course of your child’s cancer treatment, I marked time in three segments: the diagnosis, treatment and off-treatment phases. In each phase, I noticed these themes as common to many of the stories I read. Here are the elements of your stories I found most important.
o Uncertainty/uncertainty management
o Stress/stress management
o Public/private lives
For example, the uncertainty that came during the time when your child was being diagnosed had very different qualities than later, during treatment, when you may have felt a little more under control yet still lived every day with the uncertainty of the cancer’s return. Stories about managing the uncertainty and about managing stress were very instructive.
I found one common denominator in all the blogs that represented the stories of alternating negative and positive experiences. This became the title of the dissertation: “The balance we seek.” As I read and reread the blogs, this seemed to be the object of greatest desire. The effort toward balance between the five themes listed and their counterparts was one of the elements that jumped off the pages. For example, during some of the burdens experienced, gifts were seemed to be found. Many bloggers described learning of an inner strength they didn’t know existed until their child faced not just the illness but the discomforts and annoyances that came with its treatment. The good balanced the bad again and again.
One of the most significant burdens expressed by each blogger was what has been referred to by nurse researchers as “surplus suffering.” It has not been researched extensively, but I believe it needs further study and a plan of action. Surplus suffering, to me, is the suffering experienced in addition to that which comes with the illness and its treatment. Surplus suffering can be caused by family, friends, providers and the healthcare system. Even the bloggers seemingly satisfied with the treatment shared stories of friends or family who said unhelpful, even detrimental things; staff that treated family members impolitely or worse; and a healthcare system seemingly designed to confuse, aggravate and add injury to families already experiencing pain. Insurance company treatment is a category of surplus suffering that stood far above all else and should be researched in depth.
The purposes for writing were clear whether the blogger stated them outright or not. For some, the blog was a place to express things that were difficult or impossible to say in person. Writing seemed to be a way to reflect on events, feelings and changes over time. All the blogs seemed to have started as a means to keep family members and friends informed of events when telephone calling was ineffective for reaching large numbers of people. Writers used the blog to advocate for care for their child by reaching out to others in similar circumstances and to advocate for improvements in and funding for cancer research. Many used the blog to preserve memories, as an archive of the events, the changes in family life, and the feelings experienced. Another purpose for blogging was to explain to readers more about the decisions made on behalf of the child or about procedures and treatment events.
The comments from readers followed similar patterns of the themes and purposes listed above. It was easy to see how important readers were to the bloggers, especially in the entries by bloggers who made direct requests for more responses. Readers seemed to offer comfort, support, affirmation of feelings and a sense of community when families were feeling particularly isolated. In my report, I describe the contribution of readers as ballast, or a steadying effect, when bloggers’ feelings or events were off-balance.
I intend to share the findings of this research with healthcare providers, especially nurses, in professional settings. This may be in the form of research journal articles or in presentations at professional nursing conferences.
I am grateful for your willingness to share your stories with me. Reading them has changed me. It made me more determined than ever to improve care for children with cancer. May you continue to inspire, to be inspired and to be blessed with love.
I wanted to share this information with you, because YOU are the reasons I continue this blog! You loved Charli enough to care to follow her...you loved her enough to be vested in her well-being, and you loved her enough to stay with her after she was done with treatment. If there was no one here to read the blog, there would be no blog!! Thank you for loving our family, and this is just one more example of how special all of you are to our family!! THANK YOU!!!