Table 2.
Themes and subthemes with representative quotes from provider interview patients
| Theme/subtheme | Quote |
|---|---|
| Communication barriers | |
| Provider variability | Q1: “I think each clinician is different in how comfortable they feel presenting all the decisions… I think that there are some people that are better at providing all the different options. And then, I think there are some clinicians that lean towards one side. I think it’s hard to be unbiased with families. I think some people do better jobs than other people do. I think it’s just based on personal experience as well. But I see - I have the luxury of working with a ton of different providers in our clinic and I feel like it’s quite varied, the information that they actually provide families and how comfortable they are with aiding them in decisions” (NP, P12) |
| Q2: You’re going to find that [offering comfort care] is not a universally held opinion. There are people in my field who believe that it should never be offered. That no treatment is never an option and then you’ll find people along the spectrum in-between (Card, P17) | |
| Factors affecting parental comprehension | Q3: “I don’t think these parents hear a lot of this initially until they see it and they’ve forgotten a lot.. I think they’re just still trying to process that their kid has a heart defect and then when the baby comes out looking all perfect they even wonder still. Then everything subsequently is a shock….So trying to wrap your head – especially with an education level of a lot of our parents, the comprehension level trying to wrap your head around what this means for your child is almost impossible I think no matter what we try to do. So yeah, I don’t know, that’s a hard one with the families” (RN, P22) |
| Q4: “I think it’s probably got to do with how much time they have had to come to grips that there’s an abnormality in the pregnancy and probably somewhat to do with what their emotional level is when they come in to the visit. There’s some people who are close to hysterical and I don’t know that they get really anything from the counseling and there are other people who are extremely calm and could probably could give some med students a run for their money” (Card, P8) | |
| Discrepant expectations | Q5: “..maybe the parents will find the quality of life when someone that is alive even though that person can’t walk or that person can’t you know go to school, as long as they smile or you know have some type of communication among them … We assume that quality of life is someone that maybe is at home, functional with not depending on a lot of technology and independent in some ways” (CI, P32) |
| Q6: “I definitely think they have a hard time understanding what the impact is down the road. They’re so narrowly focused on what’s happening here and whether the kid’s going to survive the operation, I don’t think they even spend much time thinking about life beyond that” (CT, P29) | |
| Q7: “I think parents may tend to be a little bit more pragmatic than clinicians. I think it’s interesting that often one of the first things the dad will ask is, “Will my child be able to play sports?” And one of the first things a mom will ask is, “How will my child do in school,” which I think is an interesting phenomenon. I think clinicians tend to be very focused on the medial outcomes, you know, will there be multi-system organ disease. Will the child have neurologic complications? Will the child need feeding assistance? Will the child have renal disease, thyroid disease, et cetera? ‥ And I don’t think either perspective is more valid than the other. I think they’re all valid perspectives. That’s why you want it to be a conversation and not a lecture (Card, P17) | |
| Circumstantial barriers | Q8: “We often I think try to give too much information because we want to be complete, we want to be comprehensive but I think there’s a limited amount that a family can take away particularly from the very first encounter where we may be giving them information that they’ve never heard before. We may be introducing them to a vocabulary that sounds like a completely foreign language … ”(Card, P17) |
| Q9: “I think it’s a time issue as well. it’s already long and our goal, at least the part that I’m involved with when they meet the team is, we really feel like we need to give them as much information as we can in a short period of time” (NP, P12) | |
| Q10: “A lot of times we tend to slip into medical lingo, not realizing we are. And not recognizing what some underlying misunderstanding may be… I think the other barrier is that a lot of us in our formal training did not have formal training about breaking bad news or really teaching parents what they need to know to make a decision” (PC, P3) | |
| Trust | Q11: “You know I think it is just like the trust building, so I usually like to try to follow up with families definitely at their appointments but sometimes in-between too if I can tell that they need a little extra support. I’ll make a phone call or they can always come in and talk to me if they need to” (SW, P4) |
| Q12: “I’ve seen a lot of just mistrust with medical people, in general. That happens frequently. They just definitely question like, you know” (RN, P22) | |
| Information needed for decision making | |
| Conveying uncertainty | Q13: “I think just a range. I mean you can’t always predict, there’s certainly lots of shades of gray, but you can give them a range of what tends to happen. That some people have minimal amount of morbidity and they’re in and out of the hospital quickly. But there’s other people, that especially if they have a lot of end-organ diseases for example, with hypoplastic left heart, that they don’t always realize that it’s not going to be a cure. Maybe they’ll have a new heart, but there can be a lot of associated morbidity associated with that. There may be a prolonged hospitalization, maybe they might need dialysis. You know, there’s a lot of different things” (PC, P3) |
| Comprehensiveness | Q14: “I think families need to know what the natural history of the disease is […] And that would include the risks of morbidity and mortality, kind of among the morbidities I think they need to have a sense of potential adverse outcomes as far as neurologic outcomes, developmental outcomes, [… ] et cetera and so on. I think they need to understand what the impact is during the course of the pregnancy in terms of monitoring and evaluations and they need to understand what the impact is on the delivery of the child [… ] I think in terms of choosing an option for treatment they need to understand the medical and surgical options that exist, their potential ramifications, the potential length of stay in the hospital especially if we’re talking about a brand newborn. The potential costs in terms of, pure financial costs both short and long term. I think they need to understand if there are palliative options what those palliative options are, how comfortable the specific institution is providing palliative care [… ] Obviously a number of factors that need to be discussed during the course of prenatal evaluation to properly arm them with the appropriate information” (Card, P17) |
| Eliciting parent values and goals | Q15: “I’m not sure about that because I do feel like there is a lot of pieces of information that are important. I don’t know which one is most important. I think parents decide what’s the most important for them because I see parents concentrating on one thing or the other based on what they think is the most important” (Card, P14) |
| Q16: “I guess potential survival should be considered. I also would think… like emotional impact. I don’t know how you like measure that but… I don’t know the impact of like doing versus not doing and feeling okay with that” (SW, P25). | |
| Supporting parents in decision-making | |
| Multidisciplinary support | Q17: “I think sometimes it can help them to have access to other families who have gone through something similar and have had a variety of outcomes. There are some families that are willing to talk to them, and they’ll certainly let down their guard and ask the questions that they’re embarrassed to ask us about. And it gives them a better idea of what is life really like” (PC, P5) |
| Q18: “Not everybody agrees with that but having them involved helps give more perspective and a team of medical doctors and a social worker that they’re trying to – their group here is actually called palliative care but either they’re trained in helping with these kinds of decisions and understanding these kinds of scenarios. They’re a good resource. Our social workers are a good resource” (RN, P22) | |
| Accessibility | Q19: “I think making ourselves available to talk to them and really making sure that they have all the information that they need to make the right decision for them” (SW, P4) |
| Decision support needs | Q20: “I feel like it’s hard to speak to families when situations don’t go well, [… ] I want to pursue this year […] getting more personal education, [… ] I think I need to perfection the art of speaking to families. it’s not that easy” (CT, P20) |
Q = quote; P = provider; NP = nurse practitioner; PA = physician assistant; Card = paediatric cardiologist; CT = paediatric cardiothoracic surgeon; SW = social worker; RN = nurse; PC = palliative care team provider; CI = paediatric cardiac intensivist.