The Songs or Stories Podcast

A podcast that is actually a recorded version of a talk on perioperative management of kids who 'present with challenging behaviour' and often have as an underlying issue conditions that make experiencing the hospital overwhelming. That's things like autism but could cover other options. 

There's a bit of background and a bit of things we're trying to do so we can provide these kids with better care. 

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.

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

Mack JW, Ilowite M, Taddei S. Difficult relationships between parents and physicians of children with cancer: A qualitative study of parent and physician perspectives. Cancer. 2016; 123:675-81.

Snaman JM, Torres C, Duffy B, et al. Parental Perspectives of Communication at the End of Life at a Pediatric Oncology Institution. J Pall. Med. 2016;19:326-32.

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.

Clarke JN, Fletcher P. Communication Issues Faced by Parents Who Have a Child Diagnosed with Cancer. J Pediatr One. Nursing. 2003;20:175-91.

Eden OB, Black I, MacKinlay GA, Emery AEH. Communication with parents of children with cancer. Pall. Med. 1994;8:105-14.

Papers Relating to PICU (or at least sort of)

Roscigno CI, Savage TA, Grant G, et al. How healthcare provider talk with parents of children following severe traumatic brain injury is perceived in early acute care. Social Sci Med. 2013;90:32-9.

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.

Eggly S, Meert KL, Berger J, et al. A framework for conducting follow-up meetings with parents after a child's death in the pediatric intensive care unit. Pediatr Crit Care Med. 2011;12:147-52.

Meert KL, Eggly S, Pollack M, et al. Parents' perspectives on physician-parent communication near the time of a child's death in the pediatric intensive care unit. Pediatr Crit Care Med. 2008;9:2-7.

Needle JS, O'Riordan M, Smith PG. Parental anxiety and medical comprehension within 24 hours of a child's admission to the pediatric intensive care unit. Pediatr Crit Care Med. 2009;10:668-74.

Hoehn KS, Frader JE. Approaching parents for organ donation: Who and when? Pediatr Crit Care Med. 2008;9:234-5. 

[That one is an editorial.]

Papers Relating to NICU

Boss RD, Donohue PK, Larson SM, et al. Family Conferences in the Neonatal ICU. Observation of Communication Dynamics and Contributions. Pediatr Crit Care Med. 2016;17:223-30. 

Ward FR. Parents and professionals in the NICU: communication within the context of ethical decision making - an integrative review. Neonatal Netw. 2005;24:25-33.

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

Brogan CA, Knussen C. The Disclosure of a Diagnosis of an Autistic Spectrum Disorder. Determinants of Satisfaction in a Sample of Scottish Parents. Autism. 2003;7:31-46.

Papers Relating to Communication and Critical Care or General Communication Things 

Carnevale FA, Farrell C, Cremer R, et al. Communication in pediatric critical care: A proposal for an evidence-informed framework. J Child Health Care. 2016;20:27-36. 

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.

Hammond M, McLean E. What parents and carers think medical students should be learning about communication with children and families. Pat Educ Counselling. 2009;76:368-75.

Fallowfield L, Jenkins V. Communicating sad, bad, and difficult news in medicine. Lancet. 2004;363:312-9. 

Papers Relating to Stillbirth

Lisy K, Peters MDJ, Rittano D, et al. Provision of Meaningful Care at Diagnosis, Birth, and After Stillbirth: A Qualitative Synthesis of Parents' Experiences. Birth. 2016;43:6-19. 

Papers Relating to Discussing a Congenital Diagnosis

Fonseca A, Nazaré B, Canavarro MC. Medical information concerning an infant's congenital anomaly: Successful communication to support parental adjustment and transition. Dis Health J. 2016;9:150-6.

Skotko BG, Kishnani PS, Capone GT. Prenatal Diagnosis of Down Syndrome: How Best to Deliver the News. Am J Med Genetics. 2009;149A:2361-7.

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

Sullivan J, Gillam L, Monagle P. Parents and end-of-life decision-making for their child: roles and responsibilities. BMJ Support Palliat Care. 2015;5:240-8. 

Sullivan J, Monagle P, Gillam L. What parents want from doctors in end-of-life decision-making for children. Arch Dis Child. 2014;99:216-20.

Steele AC, Kaal J, Thompson AL, et al. Bereaved Parents and Siblings Offer Advice to Health Care Providers and Researchers. J Pediatr Hem/Onc. 2013;35:253-9.

Papers Relating to Cystic Fibrosis

Havermans T, Tack J, Vertommen A, et al. Breaking bad news, the diagnosis of cystic fibrosis in childhood. J Cystic Fibrosis. 2015;14:540-6.

Papers Relating to Hearing Loss

Gilbey P. Qualitative analysis of parents' experience with receiving the news of the detection of their child's hearing loss. Int J Pediatr Otorhinolaryngology. 2010;74:265-70.

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.

Time for another podcast and a chance to introduce a new guest. Dr David Kinchington has things to share about bread and butter paeds anaesthesia - Ts and As. Dr Andrew Weatherall took the chance to pick his brains. 

Ts and As represent the sort of work that can challenge paediatric anaesthetists working in a variety of settings. David Kinchington has spent more than a bit of time thinking about this stuff and this conversation is a quick run through things that should be useful to any anaesthetist. 

It's not even pretending to be the end of the story. Did you notice this whole site is set up so you can provide comments and clever thoughts? We'd love it if people took the chance to share their clever thoughts with the rest of us. Go hit that comment thing.

Of course any quick chat is the very start of wrestling with this topic. Following is a bunch of links for further reading for the anaesthetist finding the way to deliver periop care for these patients that works best in their hands. 

Walker P, whitehead B, Rowley M. Role of paediatric intensive care following adenotonsillectomy for severe obstructive sleep apnoea: criteria for elective admission. J Laryngology Otology. 2013;127(suppl 1): S26-9.

Theilhaber M, Arachchi S, Armstrong DS, Davey MJ, Nixon GM. Routin post-operative intensive care is not necessary for children with obstructive sleep apnea at high risk after adenotonsillectomy. Int J Pediatr Otorhinolaryngology. 2014;78:744-7. 

Tweedie DJ, Bajaj Y, Ifeacho SN, et al. Peri-operative complications after adenotonsillectomy in a UK pediatric tertiary referral centre. Int J Pediatr Otorhinolaryngology. 2012;65:809-15. 

Hill CA, Litvak A, Canapari C, et al. A pilot study to identify pre- and peri-operatic risk factors for airway complications following adenotonsillectomy for treatment of severe pediatric OSA. Int J Pediatr Otorhinolaryngology. 2011;75:1385-90. 

Waters KA, McBrien F, Stewart P, et al. Effects of OSA, inhalational anaesthesia, and fentanyl on the airway and ventilation of children. J Appl Physiol. 2002;92:1987-94.

Hullet B, Salman S, O'Halloran SJ, et al. Development of a Population Pharmacokinetic Model for Parecoxib and Its Active Metabolite Valdecoxib After Parenteral Parecoxib Administration in Children. 2012;116:1124-33. 

Li X, Zhou M, Via Q, Li J. Parecoxib sodium reduces the need for opioids after tonsillectomy in children: a double-blind placebo-controlled randomised clinical trial. Can J Anesth. 2016;63:268-74.

Carroll JL, McColley SA, Marcus CL, et al. Inability of Clinical History to Distinguish Primary Snoring from Obstructive Sleep Apnea Syndrome in Children. Chest. 1995;108:610-8.

Leong AC, Davis JP. Morbidity after adenotonsillectomy for paediatric obstructive sleep apnoea syndrome: waking up to a pragmatic approach. J Laryng Otol. 2007;121:809-17. 

Brouillette RT, Morielli A, Leimanis A, et al. Nocturnal pulse oximetry as an abbreviated testing modality for pediatric obstructive sleep apnea. Pediatr. 2000;105:405-12. 

Wilson K, Lakheeram I, Morielli A, et al. Can Assessment for Obstructive Sleep Apnea Help Predict Postadenotonsillecotmy Respiratory Complications? Anesthesiol. 2002;96:313-22.

De Oliveira GS, Almeida MD, Benzon H, McCarthy RJ. Perioperative Single Dose Systemic Dexamethasone for Postoperative Pain: A Meta-Analysisis of Randomised Controlled Trials. Anesthesiol. 2011;115:575-88.

Riggin L, Ramakrishna J, Sommer DD, Karen G. A 2013 updated systematic review and meta-analysis of 36 randomised controlled trials; no apparent effects of non-steroidal anti-inflammatory agents on the risk of bleeding after tonsillectomy. Clinical Otol. 2013;38:115-29.

Dorkham MC, Chalkiadis GA, von Ungern Sternberg BS, Davidson AJ. Effective postoperative pain management in children after ambulatory surgery, with a focus on tonsillectomy: barriers and possible solutions. Pediatr Anesth. 2014;24:239-48.

This time there is a brand new guest, the very excellent Dr Gail Wong. Gail works at The Children's Hospital at Westmead but also spent a number of years at Sick Kids' in Toronto. Starting with the sort of case none of us relish, the chat covers the mucopolysaccharidoses, management of tricky airways and the ways modern treatments have made the old descriptions of kids with these conditions less relevant. 

Notes:

Gail kicks off with a case she's had prior clearance to discuss.

The intro mix is by Blank & Kytt and the outro bit is by Breakmaster Cylinder and is provided under an Attribution Licence/Creative Commons set up on the Free Music Archive.

There is plenty of extra reading to check out to get a more comprehensive story about kids with these conditions than we could cover in a quick chat.

Here's the one by Walker and crew mentioned in the conversation:

Kirkpatrick K, Ellwood J, Walker RWM. Mucopolysaccharidosis type I (Hurler syndrome) and anaesthesia: the impact of bone marrow transplantation, enzyme replacement therapy, and fiberoptic intubation on airway management. Pediatr Anesth. 2012;22:745-51.

Here's a couple of reviews:

Hack HA, Walker R, Gardiner P. Anaesthetic implications of the changing management of patients with mucopolysaccharidoses. Anaesthesia Intensive Care. 2016;44:660-8.

Walker R, Belani KH, Braunlin EA, et al. Anaesthesia and airway management in mucopolysaccharidosis. J Inherit Metab Dis. 2013;36:211-9.

Here are a couple covering longer-term outcomes:

Aldenhoven M, Wynn RF, Orchard PJ, et al. Long-term outcome of Hurler syndrome patients after hematopoietic cell transplantation: an international multi-centre study. Blood. 2015;2164-72.

Lum SH, Stephen KM, Ghosh A, et al. Long term survival and cardiopulmonary outcome in children with Hurler syndrome after haematopoietic stem cell transplantation. J Inherit Metab Disease. 2017;40:455-60. 

Dr Andrew Weatherall sits down to record a few stand out points from the recent IARS 2017 meeting in Washington, DC. This is mostly stuff relevant to paediatric anaesthesia. There's a bit on neurotoxicity, a little on neurodevelopment and a bit of virtual reality thrown in for good measure. 

Returning for Episode 2, the Songs or Stories Podcast takes on Peripherally Inserted Central Catheters (PICCs). Dr Hillel Hope joins Andrew Weatherall to talk about these sometimes pesky things - why we're asked to put them in, choosing a line, complications, insertion practice and troubleshooting. 

As always all thoughts, comments and tips from your own practice will be gratefully received. 

For this first episode Justin Skowno and Andrew Weatherall take a tour around TIVA for kids. There's a bit about why you'd choose TIVA and what sorts of situations it is suitable for. It's not just theoretical though: there's plenty of chat about the different models, different practical techniques for delivering TIVA and a bit of a recipe. Pitfalls, practicalities and myths are all here.