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  • Assessment of parental decision making in congenital heart disease, cardiomyopathy and heart transplantation: an observational study analysing decisional characteristics and preferences

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Assessment of parental decision making in congenital heart disease, cardiomyopathy and heart transplantation: an observational study analysing decisional characteristics and preferences
  1. Hanna J Tadros1,2,
  2. Arwa Saidi1,3,
  3. Alana R Rawlinson4,
  4. Celine Cattier5,
  5. Erik W Black1,
  6. Jennifer Rackley3,
  7. Leah Breault3,
  8. Biagio A Pietra1,3,
  9. Fredrick J Fricker1,3,
  10. Dipankar Gupta1,3
  1. 1 Department of Pediatrics, University of Florida, Gainesville, Florida, USA
  2. 2 Section of Cardiology, Department of Pediatrics, Baylor College of Medicine, Houston, Texas, USA
  3. 3 Congenital Heart Center, University of Florida, Gainesville, Florida, USA
  4. 4 Department of Clinical and Health Psychology, University of Florida, Gainesville, Florida, USA
  5. 5 Department of Palliative Care, University of Florida, Gainesville, Florida, USA
  1. Correspondence to Dr Dipankar Gupta, University of Florida College of Medicine, Gainesville, FL 32610, USA; dgupta{at}ufl.edu

Abstract

Objective We explore shared decision making (DM) in guardians of children with heart disease by assessing the desired weight of influence on DM and factors that may alter the relative weight of parent or medical team influence.

Methods Guardians of patients <21 years and admitted >1 week in the paediatric cardiac intensive care unit (PCICU) were recruited. Twelve vignettes were designed including technical (antibiotic selection, intubation, peripherally inserted central catheter placement, ventricular assist device placement, heart transplant, organ rejection, heart rhythm abnormalities and resuscitation effort) and non-technical vignettes (cessation of life-sustaining therapies, depression treatment, obesity and palliative care referral). Participants responded to questions on DM characteristics and one question querying preference for relative weight of parent or medical team influence on DM.

Results Of 209 participants approached, 183 were included. Most responded with equal desire of medical team and parental influence on DM in all vignettes (range 41.0%–66.7%). Technical scenarios formed one cluster based on DM characteristics, compared with non-technical scenarios. Factors that increase the relative weight of parental influence on DM include desired input and involvement in big-picture goals (OR 0.274, CI [0.217 to 0.346]; OR 0.794, CI [0.640 to 0.986]). Factors that increase the relative weight of medical team influence on DM include perception of medical expertise needed (OR 1.949 [1.630 to 2.330]), urgency (OR 1.373 [1.138 to 1.658]), benefit (OR 1.415 [1.172 to 1.710]), number of PCICU admissions (OR 1.134 [1.024 to 1.256]) and private insurance (OR 1.921 [1.144 to 3.226]).

Conclusion Although factors may alter the weight of influence on DM, most parents desire equal parental and medical team influence on DM.

  • cardiology
  • child health services
  • health services research
  • intensive care units
  • paediatrics

Data availability statement

Data are available on reasonable request.

https://doi.org/10.1136/archdischild-2022-324373

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    Data availability statement

    Data are available on reasonable request.

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    Footnotes

    • Contributors HJT and DG conceptualised/designed the study; collected data; aided in interpretation of data and analysis; drafted the initial manuscript; reviewed and revised the manuscript. ARR conceptualised and designed the study; collected data; aided in interpretation of data and analysis; drafted the initial manuscript; reviewed and revised the manuscript; carried out the cognitive interviews. FJF, AS, BAP, CC, LB and JR conceptualised and designed the study; aided in interpretation of data and analysis; reviewed and revised the manuscript. EWB carried out statistical analysis; aided in interpretation of data; reviewed and revised the manuscript. DG is the guarantor.

    • Funding This work was supported by the American Academy of Pediatrics Resident Research Grant and the Children’s Medical Network Resident Research Grant.

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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