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The Tough Talk
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.
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By The Songs or Stories Blog SiteDr 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.