Following last week’s post, I’m going to start tackling this self-advocacy puzzle by writing about the first of the 4 sets of skills the National Coalition for Cancer Survivorship outlines as necessary to be a self-advocate: information-seeking skills.
 
In thinking about information-seeking skills from a teen/young adult perspective, I think the biggest barrier to developing good information-seeking skills is simply the availability and accessibility of information. If you don’t have the information readily available to you, and/or you don’t have an easy/understandable way to access it, it can next to impossible to know what to do. That is, after all, why I started this website and wrote my book: the information I wanted was not available or accessible to me.
 
That being said, I have learned a lot about seeking information since I started this blog about 6 years ago. And, for our age group, it's still unlikely the information you want will be handed directly to you. So, I want to share my biggest tips and tricks with you to equip you with the knowledge to be a better information-seeker. Disclaimer: These are all suggestions based on my personal experience with seeking information for myself, blog, and my book...this is not professional advice.
 
To me, the most important place to start when seeking information is with defining what information you are looking for. We are used to just plugging things into Google when we want answers, but when it comes to health research, it can be useful to follow a bit more of a specific process.
 
Step 1: Define what information you want. I like to turn the topic into a list of key words/phrases. Be as specific as possible.

• This may seem silly, but using key words and being as specific as possible can make the research process a lot easier. This tactic is helpful because a lot of major organizations and hospitals use something called Search Engine Optimization (SEO), which means they fill their website pages with key words that help search engines like Google to find those websites first and filter those websites to the top of Google Search lists. By using keywords, you can take advantage of SEO to find what you want, and get Google to work for you rather than against you.

 

• For example, if I want to research web-based programs for teens with cancer, I can definitely define that as my topic. But, if I put that into Google, it might take me hours to find something useful because hundreds of results will come up. So, I like to make a key word/phrase list. In this case, I would include “online forums for teens with cancer”, “video chat platforms for teens with cancer”, “hospitals that run web-based programs for their teen patients”, and “organizations that run online support programs for teens with cancer”. You can make this kind of list based on key words/phrases you already know (as I did in this example, since I know web-based programs include online forums, video chat platforms, etc.). Or, if you are not familiar with a topic, you can make the list by plugging your general topic into Google and scanning the results to see what key words/phrases you see continually come up.  For example, if I’ve just been diagnosed with leukemia and I want to learn more about it, but don’t know where to start, I put “leukemia” into Google. Scrolling down the results page, I see words like “Causes”, “Symptoms”, “Childhood”, and “Treatment”. So, I can make a list of search ideas by combining these key words. Given I want to find out of teenage leukemia, not childhood leukemia, I come up with the following: “teenage leukemia causes”, “teenage leukemia symptoms”, and “teenage leukemia treatment”. This way, I break down my search into smaller pieces that might lead me to more direct results.

 
This brings us to Step 2: Use the internet **very carefully**. I compiled almost everything I have written about on this website and in my book from online research. So, the information you want is out there, but you must know where to look, and it is critical to understand what are reliable sources of information. This is where the **very carefully** comes into play.

• Reliable sources of information include major health organizations, academic journals, or hospitals.  My main sources of information, for both the psychological and medical aspects of treatment and survivorship, tend to be major organizations that you can see have been around for a long time and have information provided by physicians, psychologist, nurses, or other health professionals (some examples include The National Cancer Institute, The American Cancer Society, Cancer Knowledge Network, Stupid Cancer, Livestrong, or hospital websites). You can check out the resources page of my site for more ideas on where to find the information you want. These sites are very useful because they provide a very wide range of resources, but also convey the information in a way that is much easier to understand.

 

• Another great way to find reliable sources of information, particularly if you want to get into the nitty-gritty science of cancer treatment, psychological services, and survivorship, is by taking a more academic approach to your research. The easiest route for this is Google Scholar because it easily allows you to search for research articles about almost anything. You still want to be careful when using this search tool though because there are a lot of medical journals out there and not every article is reliable.

 

• In Google Scholar, a good way to be sure the article you are reading is from a reputable source is to look at the number of times the article has been cited. For example, when I search in Google Scholar for “support for teens with cancer” I get a lot of results. But, when I look at the “Cited by…” under the link, I can see how many people have cited the article in their work. Below is a screenshot of one of the results of the Google Scholar search. You can see the "Cited by..." on the bottom left.

• Choosing articles that have been cited more than 20-30 times is a good idea, just to be on the safe side, because then you can be sure multiple other research professionals found the information reliable enough to use in their own work.

 
Step 3: Use the most recent information you can find.

• Another important thing to consider when using the academic research approach (and when doing any online research for that matter) is how recent the information is. In Google Scholar, you can filter out articles by the year they were published. It is generally a good rule of thumb to stick to research that has been done in the past 5-10 years.

 

• Similarly, when using websites like the National Cancer Institute site or Stupid Cancer, you can also keep an eye on how recent the information is. For example, on the National Cancer Institute website, there is a coping guide that talks about feelings and cancer. If you scroll all the way to the bottom of the page, you will find a “Posted” stamp, which says “Posted: December 2, 2014.”  These kind of date stamps can typically be found at the bottom of information pages. Alternatively, if you check out blogs, like this one, or the Stupid Cancer Blog, the date is typically at the top of the posting, under or next to the title.

 
Finally, we come to Step 4: Developing your resource portfolio.

• Once you have gone through several searches and have become familiar with a range of sources, you will start to find ones that you like more than others, or ones that publish new information on a continual basis. For me, my resource portfolio includes the resources I share on the resource page of this website, as well as the academic sources I find through Google Scholar. I also prefer sources that have something like a blog where there is new information shared on a regular basis, so I can keep up-to-date on the information I am interested in. For example, you can get email updates from certain organizations, like the Dana-Farber Cancer Institute Insight Blog, you can follow the National Cancer Institute on social media, and you can subscribe to the electronic or paper version of Cure Magazine. By becoming familiar with the sources of information out there, you can make it a lot easier to get the information you need, when you need it.

 
The reason I have found information-seeking skills to be so helpful is because they can increase your self-confidence. When you go into doctor’s appointments or meetings with health providers, and you are armed with the knowledge about your condition, you are better equipped to ask questions, and this ultimately helps you take greater control over your health and wellbeing. Long story short Information -> Knowledge -> Self-Confidence -> Owning your health and wellbeing.

In a post for Cancer Knowledge Network that I wrote back in November, I talked about the challenges involved in the transition from pediatric to adult healthcare, and the need for more support and education to be provided to teens and young adults to be able to successfully get through this transition. In the last couple of months, I have gotten to wondering what, above all other obstacles, is the most important thing to help get young people to feel comfortable taking charge of their own care? After talking with some other young adult cancer survivor friends, and some friends of mine who have chronic illnesses, one topic repeatedly came up in the discussion about transitioning to adult healthcare: self-advocacy.
 
So, what exactly is self-advocacy?
 
According to the National Coalition for Cancer Survivorship, self-advocacy means: “…You arm yourself with the tools and skills necessary to feel comfortable about asserting yourself and communicating clearly about your cancer care needs.” They also summarize that the skills necessary for self-advocacy include: information seeking skills, communication skills, problem-solving skills, and negotiation skills. 

Through further research, I also found that perspective can play a role in enabling or disabling you from successfully advocating for yourself. I came upon an article about self-advocacy by a psychologist, who is herself a cancer survivor, in the online magazine Psychology Today.  One statement she made that really stood out to me said that many patients “…may find it difficult to question someone they perceive as authority figures who control their destiny. They may fear asking “dumb” questions or alienating their doctors by questioning them.” This highlights a perspective that I know, from my own experience, seems to be at the heart of helping teens and young adults become self-advocates: learning that your doctors are not controlling authority figures and that there are no “dumb” questions.
 
To summarize, it seems there are 3 crucial pieces to this self-advocacy puzzle: (1) Developing a range of skills that enable you to feel confident in your ability to clearly communicate your needs, (2) recognizing that your doctors are not authority figures with control over your future, and (3) it’s your body and your health, so you are entitled to ask any question at all – there is no such thing as a “dumb” question.
 
Seeing as this is a pretty complicated puzzle, I thought I’d take some time to break it down. In my next few posts, I’ll cover each of these puzzle pieces, to try to make it easier for teenage and young adult cancer patients or survivors to piece together the necessities for becoming self-advocates.