Research in Children with Advanced Illnesses: Advancing the Field Together

Have you ever been in a room of like-minded individuals who share the same passion? It is an invigorating and energizing experience!

Hi, my name is Cindy Bell and I am the Blogger for the pre-session Research in Children with Advanced Illnesses: Advancing the Field Together. There were several experts who presented and many more who were gathered around the room. Each brought invaluable insight to identify some of our BIGGEST CHALLENGES in doing research involving children with advanced illnesses. Collectively we discussed some possible solutions. As we mull over and digest this information, this blog gives us the opportunity to discuss some of our lingering questions.

  • Chris Feudtner, MD PhD MPH, Director of Research, Pediatric Advanced Care Team at CHOP (The Children’s Hospital of Philadelphia) gave us a very broad overview of pediatric palliative care research as well as research priorities in the field. One of my most significant take away points from Chris was that through education, exposure, and support we morph over time. So, what do we need to change to get the job done? This type of research has many barriers. Someone mentioned that in the 5 years their study was open; they put in 15 amendments to IRB. As Chris aptly pointed out, maybe we need to change the name of the study and say,”This is a study about decision-making”; not palliative care or death and dying. We are not the only ones “morphing.” He had us think a moment about the impact of our research. What is the collateral effect of our research on our colleagues? Clinical practice influences research but research in turn, impacts clinical practice. So what do you and I need to change at our institutions through education, exposure support, and collaboration to get the job done?

  • Christina Ullrich, MD MPH, and Veronica Dussel, MD MPH, from Dana Farber Cancer Institute & Children’s Hospital Boston kept the ball rolling as we discussed some of our main challenges and possible ways to overcome these challenges.
    • What are some of the barriers you are still struggling with that you would like to discuss further?

  • Pamela Hinds, RN PhD, FAAN Director of Nursing Research at Children’s National Medical Center in Washington D.C. offered insight on Qualitative Research which allows us to listen to the problem and develop ways to address the problem. Being “listened to” can be very therapeutic for our patients and their families who are facing life-threatening diseases.
    • One important caveat for qualitative researchers is to match the person, topic, and context. Pam presented specific education on coding data for Content Analysis and Grounded Theory methods. Some of us had questions on the software available for coding. There are 2 programs that several participants are using: NVIVO and Atlas-TI. Betty Davies, RN PhD FAAN, shared some names of “experts” who are available for collaboration on Grants, including Guenther Krueger (NVIVO) from Burnaby, BC, Canada and Nick Wolf (Atlas-ti) from Santa Barbara, California.
    • PROMIS outcome site is another resource Pam mentioned. There are some outcome measurements for pediatrics that have been developed, although they haven’t been tested in really sick children yet. Check it out!

  • Joanne Wolfe, MD MPH, Director of Pediatric Palliative Care at Children’s Hospital Boston offered wonderful insights throughout the day and expertly summarized our ½ day session. I have briefly included some of the highlights. Please feel free to add your thoughts!
Our Big Challenges Possible Solutions
  • To facilitate an environment that will support research for children with advanced illnesses
  • Start somewhere – do what you can do, then bring back your publications to your institution
  • To develop multi-site studies to move the science forward
  • Build collaborative relationships- start simple and work together
  • What ways you have developed these collaborations?
  • To extend beyond our primary discipline to conduct interdisciplinary research across groups
  • Ask, invite, and be visible within your organization
  • To reach beyond our borders to collaborate with other Nations
  • Recognize the unique contributions of other cultures
  • What are some ways you have been successful in collaborating internationally?

Thank you to our excellent facilitators pictured left to right (Joanne Wolfe, Pamela Hinds, Christina Ullrich, Chris Feudtner, and Veronica Dussel).

It has been difficult to capture all of the wonderful information that was discussed. Now it’s your turn to add your thoughts and comments. Happy Blogging!

It has been my pleasure,

Cindy Bell, PhD(c), RN

Pre-doctoral Fellow, Mary Margaret Walther Program of Cancer Care Research, Indiana University. (Novice blogger)

SAVE the DATE: Quality of Life for the Children: The Fourth Annual Pediatric Palliative Care Conference November 5 & 6, 2010. For more information email

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