Dr Andrew Weatherall was asked to do a talk covering things from the parent’s perspective when it’s time for bad news. It’s just been updated with a podcast version of the talk. You’ll also find the bibliography down below.
There are some very important acknowledgments to start out here. The first one, obviously is my extremely better half Kate. This would not be possible without her.
The whole talk also relies on the amazing generosity displayed by a range of parents who shared their insights and also stories of their experiences, along with stories of their kids. I cannot express the depth of my gratitude.
Megan Chapman, Senior Clinical Psychologist at RCH Melbourne was an invaluable resource.
Anyway, here’s the various ways to get the podcast.
Right click and choose save as to download the podcast. (That’s control-click if you’re on a trusty Mac.)
Of course you could just find the podcast over at iTunes here.
And in exciting developments the podcast is now listed over at Stitcher. The show link should be here.
Or the rss feed is here.
It’s still very important to me to make it easier for people check the source literature. So here, in no particular order, is the bibliography for this talk. These are the ones I actually found useful and underpinned much of what I said. Unsurprisingly they are mostly qualitative in nature, which is a pretty great demonstration of the richness offered by that form of research.
I should point out that the reason I was asked to get involved is captured in this thing I wrote for The Guardian a while back.
Now, here’s the list of the many papers I travelled through on the way to the talk. I’ve divided them into specialty areas as much as possible.
Papers Relating to Oncology
Landry-Dattée N, Boinon D, Roig G, et al. Telling the Truth … With Kindness. Retrospective Evaluation of 12 Years of Activity of a Support Group for Children and Their Parents With Cancer. Cancer Nursing. 2016;39:E10-E18.
Papers Relating to PICU (or at least sort of)
Meert KL, Eggly S, Berger J, et al. Physicians’ experiences and perspectives regarding follow-up meetings with parents after a child’s death in the pediatric intensive care unit. Pediatr Crit Care Med. 2011;12:e64-e68.
[That one is an editorial.]
Papers Relating to NICU
Mahan CK, Perez RH, Ratliff M, Schreiner RL. Neonatal Death: Parental Evaluation of the NICU Experience. Issues Compr Pediatr Nuts. 1981;5:279-92. [Yep, for historical perspective things like this still got a read.]
Papers Relating to Autistic Spectrum Diagnosis
Papers Relating to Communication and Critical Care or General Communication Things
Førde R, Linja T. “It scares me to know that we might not have been there!”:a qualitative study into the experiences of parents of seriously ill children participating in ethical case discussions. BMC Med Ethics. 2015;16:1-8.
Papers Relating to Stillbirth
Papers Relating to Discussing a Congenital Diagnosis
Kupst MJ, Dresser K, Schulman JL, Paul MH. Improving Physician Parent Communication – Some Lessons Learned From Parents Concerned About Their Childs Congenital Heart Defect. Some lessons Learned from Parents Concerned About Their Child’s Congenital Heart Defect. Clinical Pediatr. 1976;15:27-30.
Papers Relating to End-of-Life Discussions
Papers Relating to Cystic Fibrosis
Papers Relating to Hearing Loss
Papers Relating to Communication and Parents of Kids with Disabilities
Kushnir T, Bachner YG, Carmel S, Flusser H. Pediatricians’ Communication Styles as Correlates of Global Trust Among Jewish and Bedouin Parents of Disabled Children. J Dev Behave Pediatr. 2008;29:18-25.
The intro music (RSPN) for the podcast came via the Free Music Archive and is by Blank and Kytt.
The images for the talk all came from unsplash.com which has Creative Commons type stuff and is pretty easy to sign up for. I tried this for the first time. The images were posted by Brandon Morgan, Eder Pozo Perez, Jeremy Bishop, Joshua Sortino, Markus Spiske and Max McKinnon. The image of the SpaceX launch came from the Creative Commons part of flickr.com and was posted by SpaceX and unchanged here. Other images were from me.
If you just made it this far, there is some music you might like to check out. I think you’ll see why I chose it (and I don’t very often put any audio in a talk).
This is Florence + the Machine, with a live recording of ‘Cosmic Love’.