Table 4 Quotes Reflecting Communication Solutions

Shared system that can be accessed in real-time

“I think [instant messaging] would allow parents to ask a question and obviously, they’re not gonna respond back ASAP, but it would at least be out there, so then you’re less likely to forget to ask that question. I find it’s [instant messaging] a lot easier, I’m able to send her photos of things right away, just to her phone, like, is this OK? She was able to respond back within 10 min and set up a plan.” P56

“If I have a simple message that I want to tell the nurse, I wouldn’t have to wait for the nurse to listen to my message, I can just say, take a look at the message portal…any medical concerns that should be mentioned to the nurse have to be privately emailed, and there’s no time for that so, it’s important to be more proactive with time. [Instant messaging] would be very helpful.” P57

“I find phone calls with updates and consultations really challenging because time is difficult. When you’re working with a part-time job and then, my daughter, whose needs are 24/7, eyes-on care, it’s really challenging to focus in on a phone call… I find it a lot easier via email, because I can do that in the evening after I’ve settled my little one into bed, and I’m waiting for the nurse to arrive.” P60

“The frustration with the physicians is not being able to contact them, which probably would be made easier with email” H-HCP37

“When I’m talking to them about the pager, and I show them something archaic from 1980, that doesn’t seem to be a problem and I wonder if, using kind of more modern technology, if people are going to expect that more instantaneous response.” H-HCP37

“People don’t want to be on the phone. They want to be able to send a quick little text and get a quick answer back…I would assume [instant messaging] would make the families feel more comfortable as well, cause they’re able to get a hold of that physician, without calling an office, waiting for a secretary.” C-HCP9

“I don’t want patients contacting me 24/7 with their questions [via text] because, I don’t have time for that. .. at least the email, I don’t have to look at it if I don’t want to, whereas my phone, like you’re constantly looking at your phone.” C-HCP41

“Well communicating as a team is always, always helpful, if we could do that on a platform. .. or be able to do something face-to-face where you don’t necessarily have to be in the home. Everybody can be at their location, would be helpful.” C-HCP7

“I shouldn’t text, they shouldn’t know my private number, but I do give them my private number. I need to be in contact with the [parents], and they don’t abuse that. Sometimes I need to call 911, when the kid’s having a seizure, so I don’t have time to go to the office [to call family]. That’s why they have my private phone number and I communicate with it when I need to.” T12

“A group message would be important if there’s multiple people concerned in the issue like the dietician, myself, the physician, and the parents.” T11

Universal access to health information

“If I’m in a situation where I don’t have my binder or it was an emergency, and I need to talk to [health care team] about something, I could pull [child’s health record] up directly on my phone, that’s helpful. Or if my husband has got [child] and something comes up, it’s shared, it’s not just in a binder at home.” P3

“I want records because records give me a lot. Let’s say if I want to apply for something from the government, I can pull that up and say, listen, this is a proof of my son’s diagnosis, from day one.” P57

“Having an ability to be able to access his medical records to show other professionals, so that we can get the help we need, I think would be super beneficial for any parent.” P56

“I just find that sometimes…you’ve got a community provider who’s got a bunch of verbal information from a family and especially if English isn’t their first language or if they’re not super historians, then you may have a community therapist that all of a sudden needs to verify some stuff.” H-HCP37

“We always hear from families about repeating their story…for the providers involved in that child’s team to be able to see that information without having to ask them for the fifteenth time, that would be beneficial.” C-HCP6

“If we could get the [hospital health record] before they come in for their first appointment, that would be helpful. It would be nice if the community pediatrician sent me the records before I was seeing the patient so I could do some background and that will make the first appointment a little bit nicer.” C-HCP41

“Having [online health information] to reference during a case conference would be amazing. I think just having that so quick and easy at my fingertips would be helpful.” T21

“It would be helpful to have previous testing results in some form… The family didn’t have a whole lot of documentation readily available and we had to request those things from the doctor. It would have been valuable to have that information ahead of time so that we could plan more effectively for care.” T11

Partnered Contribution to Care

“One time the emergency doctor who was there, said ‘before I read any of his history, you tell me what you think is going on, and I will start working on what you think is going on, and then I will look into other things.’ He said, ‘Complex Care moms know more than any of us know in the amount of every years that we went to school because they know everything about their kid’…We ended up getting the issue resolved a lot quicker.” P56

It’s more peer-to-peer. It’s working out the problem together! Not just saying ‘we’re gonna do this’…Get my opinion, get my thought process. Get me on board. Tell me what you’re thinking, so I understand why we’re doing this. It takes 5 min, but it saves you an awful lot of time down the road. P55

“She took time and talked with me and she listened to what I had to say, and didn’t push me into a decision, but basically said that you ultimately need to decide what’s best for you and the family, which is exactly what healthcare practitioners should be doing. Advising you with all the information needed for you to make a good decision.” P59

“I think it’s also nice if the family feels that they helped create the [health record] and that it really is reflective of their child and what they want people to know, not just about the medical piece.” H-HCP37

“I think it’s really important that we allow parents to be very involved in their children’s care because they are the ones primarily taking care of this child, 24/7. The doctor only sees them either when they’re sick, or when it’s a regular old check-up. I think it’s really important that parents are active within their children’s care.” C-HCP9

“We’d have to do the [care planning] together. Much like what we do with the Individual Education Plan, that has to be done with the family because you’re working towards goals together…it would be a good opportunity to work together to stay on track and come up with short- and long-term goals together.” T11

“It would be better to hear from the actual proper source [medical team] than to hear from someone else that didn’t really have the information proper.” T14