TABLE 1.
Summary of stakeholders’ perceived barriers and facilitators
| Theme | Barrier (B) | Facilitator (F) | Senior Admin | Clinician | Parent | Youth | Supporting quotes |
|---|---|---|---|---|---|---|---|
| Stakeholders lack SDM and decision support knowledge | ✓ | B | B | B | B | “ML gave a [SDM] presentation last year and that was the first I had heard of it.” – Senior administrator “No, I have never been exposed to it [decision support].” – Clinician “[Decision support] seems like a good use of resources. As long as staff are aware that [it] exists.” – Clinician “No one had offered this type of model [SDM] or guidance [patient decision aid]. No one had dispensed this type of advice and we had asked for this exact type of help.” – Parent “[I] have never heard of it [SDM].” – Youth |
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| SDM and decision support is compatible with the hospital’s organizational culture and practices | ✓ | F | F | F | F | “I am fully behind this [decision support program] and I think it is a necessary and important service for families.” – Senior administrator “I think this [decision support] program…is very patient-centred.” – Clinician “The fact that the institution strives for family-centred care - I think health care consumers and parents are always looking for the best information available and the best synthesis of information.” – Clinician “[Decision support] would come very naturally for us.” – Clinician “It [decision support] certainly fits with [our hospital’s] motto of family-centred care.” – Parent “This [SDM] is what happens in my doctor appointments anyway. They don’t just tell you what to do and walk away. I’m given choices and asked what I think.” – Youth |
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| SDM and decision support will improve patient and family outcomes and/or experience | ✓ | NA | F | F | F | “I think partially informed decision making and paternalistic practice [are common]…seems like SDM would bring better balance to the decision.” – Clinician “[Decision support] allows families to take greater responsibility for the decisions made, thus potentiallyimproving adherence and self-management for chronic illness.” – Clinician “Decision coaching and working through the [patient decision aid] facilitates the conversation, helps families to articulate the benefits and harms, and arrive [at] a plan of action to obtain missing knowledge.” – Parent “If I’m intimidated I just listen and do what [the doctor] says. But if I feel comfortable I usually ask more questions.” – Youth |
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| Stakeholders motivation and attitudes about decision support might impact uptake | ✓ | ✓ | F | F | F | B | “Attitudes that this [decision support] will help families [will promote implementation].” – Senior administrator “[Decision support] is very intuitive; buy in should not be that difficult.” – Senior administrator “…this [decision support] program sounds great.” – Clinician “I think partially informed decision making and paternalistic practice [are common] or in some ways where the patients feel the opposite and patients are weary of their health care professional because they have so much autonomy. Seems like shared decision making would bring better balance to the decision.” – Clinician “In our opinion, it [the decision support program] is an essential service and should be part of the care our children receive.” – Parent “We just go with what the doctor thinks. Why would we do something else?” – Youth |
| Uncertainty within and across stakeholder groups about the applicability of the decision support program for different clinical situations | ✓ | ✓ | F | F/B | F | F/B | “I really see a role for decision support and decision aids in palliative care, neuromuscular, and spina bifida.” – Senior administrator “[Decision support] would be more helpful for people with new diagnoses [compared to chronic conditions]… But some decisions can be life long and it depends where you are with the decision.” – Clinician “If an urgent decision is required and the parents are not present, they may not be involved in the decision process or we may not have time to explore the benefits and harms.” – Clinician “[Decision support is probably only useful for]… a big decision with lots of confusion around it.” – Youth |
| The decision support program must be integrated into clinics to promote workflow efficiency and ensure timely service delivery to families | ✓ | ✓ | B/F | B/F | F | NA | “I think a loose part it [sic] is families having to leave their appointment and then come back for a meeting with the [decision support] program. If I were the one with decision uncertainty I would want to deal with it immediately. I think you might lose families to this process.” – Senior administrator “As long as…decision coaches are there in a timely fashion. But if you get into a situation where you have a waitlist to see the decision coach as well as to see the specialist, it may not be practical.” – Clinician “I believe that the [decision support] may save time and reduce the number of consults in the long run.” – Clinician “The process of examining of what is important to a patient outside of the immediate pressure of having to make a decision in the encounter [is useful]. It gives patients a chance to reflect on their values in a structured way.” – Clinician “I like the idea that the coach is separate from the [health] team. It allows the family to have a couple degrees of separation.” – Parent |
Admin Administrator; NA Not applicable; SDM Shared decision making