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031 Just say ‘we don’t know’-shared decision-making in the face of uncertainty: an assessment of the sensibility of a model of shared decision making for children with medical complexity while hospitalised
  1. Francine E Buchanan1,
  2. Peter J Gill1,
  3. Sanjay Mahant1,
  4. Naomi Gryfe Saperia1,
  5. Sharon E Straus2,
  6. Christine Fahim2,
  7. Karolyn Hardy Brown3,
  8. Glyn Elwyn4
  1. 1Child Health Evaluative Sciences, SickKids Research Institute, Toronto, Ontario, Canada
  2. 2Knowledge Translation Program, St. Michael’s Hospital, Unity Health Toronto, Toronto, Canada
  3. 3Peterborough Regional Health Centre, Peterborough, Canada
  4. 4The Dartmouth Institute for Health Policy and Clinical Practice, Darthmouth, USA


Introduction Children with medical complexity (CMC) are the most medically fragile sub-set of paediatric patients who require intensive support from caregivers.1 Due to the co-existence of underlying diseases, caregivers and clinicians of CMC face decisions with unclear answers, with inadequate evidence to support treatment options. A conceptual model of SDM for CMC2 addresses the process of SDM when faced with complex, ambiguous clinical situations in which all possible outcomes cannot be known. This poster will present a how a conceptual model of SDM for CMC was revised and assessed for content and face validity by end users.

Methods Virtual focus groups were held with 5 health care providers and 11 caregivers of CMC via Zoom. A video describing the model of SDM for CMC, was presented followed by a series of open-ended questions surrounding the model’s look, language, and usability.3 Suggested changes to the model and attributes to maintain were discussed. The steering committee reviewed the proposed changes which were then approved by consensus. In collaboration with a graphic artist, A revised model was produced with a graphic artist. The revised model was distributed to focus group participants with a survey to appraise sensibility using a 5 point likert scale.

Results Mean score visual acceptability was 4.1 with 4.2 for usability.

Discussion/Conclusion The changes to the models addressed the need for better reflect the decision maker as a person, the goal of relationship building and continuous nature of knowledge building. The revised model was well received by respondents regarding layout, content, language and usability.


  1. Cohen E, Kuo DZ, Agrawal R, Berry JG, Bhagat SKM, Simon TD, et al. Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics. 2011;127(3):529–38.

  2. Buchanan FE. Making difficult decisions: an activity-theory informed qualitative study of shared decision- making for children with medical complexity [Thesis]. 2021.

  3. Légaré F, Stacey D, Pouliot S, Gauvin FP, Desroches S, Kryworuchko J, et al. interprofessionalism and shared decision-making in primary care: a stepwise approach towards a new model. J Interprof Care. 2011;25(1):18–25.

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