Anyway, back to this particular Monday. I realized maybe I should clarify exactly who I am and what I'm doing. I am a second year doctoral student focusing on Health Behaviors in the greater span of Public Health. I will take classes in the spring and then I proceed to primary comprehensive exams (June), dissertation proposal (August, hopefully), secondary comprehensive exams (around the same time), and then a year or so working on my research and dissertation. Of course all of the latter things hinge on me passing the first round of comps. I'll be getting progressively nervous about these as the months go by.
As I have mentioned, my interest is adolescent cancer patients and survivors. I am particularly interested in quality of life, transitional care, and survivorship. While I have plenty of my own material to draw from, I am more interested in what these individuals need to improve their lives on the daily and how we can provide that for them. Sadly this is an extremely under-researched area, and currently a very large gap in the literature exists. It's time for this to change, I believe. There is such a high survival rate from childhood and adolescent cancers, but what good is living if you aren't enjoying it? This is where I hope to come in. Everyone's experience is different and I am astutely aware that I cannot generalize my feelings and experiences as "typical" for everyone in this group. I feel pretty sure that my experiences are somewhat atypical, but that is one of the things I am hoping to find out.
So how do we improve quality of life? You tell me. What do these individuals need to make their lives a little (or a lot) better? My opinions (oh, I have so many) on the matter range greatly. One of my thoughts is that we need to provide them with more information about what they are going through (not knowing and/or understanding breeds fear and fear breeds consistent anxiety...not the makings of an enjoyable existence). Although there is a lot of information out there, is it targeted? Is it age-appropriate? Is it thorough and helpful? A lot of the information resources I've seen are not. They are either far too complex and even I don't know what they are talking about (not that I'm an expert...yet). Or often they are oversimplified and might hint at what's going on but don't really provide any answers. And if other patients are anything like me, they have a lot of questions. One thing that I particularly find lacking is information about treatment, side effects, and what to expect long-term. Unfortunately, and as I did not know, side effects do not necessarily end when treatment does, and some pop up unexpectedly even years later (more in a later post).
I also think it could improve things for these patients if they are actively involved as much as they want to be in the decision-making process. I know that under 18 means parents and guardians have to okay everything, but that isn't a reason for these teens to be ignored or left out of what they will be going through. Social support is also a key issue--what kind of support are they looking for and how can we help provide that? Are peer groups best, or one-on-one conversation? Does sharing help? And how can we incorporate technology into these notions. Adolescents and children today are way more advanced than I am and the world of internet is what they live in. Why not appeal to these areas; provide them with resources in a format they are familiar with and enjoy? Facebook, twitter, blogging...the possibilities seem endless. But what helps, what doesn't, what do they like, what do they prefer? Have they ever even been asked???
My opinion on the matter is that we as researchers, medical professionals, clinicians, and all those involved need to change our point of view. We don't need to decide for them what they need or want. We need to ask them and let them guide us if we really want to make a difference. And I do.
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