Rebecca Delaney, PhD discusses shared decision making in life-threatening congenital heart defects (CHD). (Thread) #SMDM19
Backstory:
Parents with children born with CHD are faced with an impossible choice:
1. Palliative care
2. Surgery--it is not a good prognosis post-surgery. The child may life days to weeks with a subpar quality of life.
#SMDM19
Parents with children born with CHD are faced with an impossible choice:
1. Palliative care
2. Surgery--it is not a good prognosis post-surgery. The child may life days to weeks with a subpar quality of life.
#SMDM19
Rebecca was interested in understanding what goes into the decision-making process. #SMDM19
Methods:
Focus groups conducted with both parents who choose surgery and parents who chose palliative care.
#SMDM19
Focus groups conducted with both parents who choose surgery and parents who chose palliative care.
#SMDM19
Observations
1. Some parents chose a rational approach and some valued intuition.
Rational parents want to know the numbers, probability of success, risk etc. Parents that relied on intuition trusted what their gut said. #SMDM 19
1. Some parents chose a rational approach and some valued intuition.
Rational parents want to know the numbers, probability of success, risk etc. Parents that relied on intuition trusted what their gut said. #SMDM 19
3. Clinician specialty matters--
Cardiologists talk about surgical care.
OBs talk about palliative care.
Could this bias the decision-making process? #SMDM19
Cardiologists talk about surgical care.
OBs talk about palliative care.
Could this bias the decision-making process? #SMDM19
4. Parents leaned into religion/spiritual beliefs when making the decision. But the belief did not correlate with the decision chosen. #SMDM19
The main focus of the focus groups regarded what the quality of life of the child would be with each choice (palliative vs. surgery) #SMDM19
Say you are faced with a difficult healthcare decision. Are you a rational type or intuitive type? #SMDM19
