Table 3 Quotes Reflecting Communication Challenges

Organizational policy and technology systems barriers

“I don’t have access to a fax machine. I used to be the one to order all of his IV medication and supplies for home and recently, [home care] said…you have to get the nurse to do it… She’s had to go to a corner store to use a fax machine. Part of me is like, you’re saying that fax is more secure, but not when you’re going to use a fax machine in a public place.” P2

“I wanna feel supported, so if I get a response to the email I’m gonna feel like I’m getting supported. If I’m not getting the response back or if I can’t send an email, I don’t feel supported.” P57

“We still use email with [health care team] once in a while, but…every time, with every new provider, I have to go in and sign permission forms, that, yes, I give them permission to use email…It takes time and energy and effort.” P55

“Parents are asking us to text, which we currently do not have a policy at all for that...so for parents the preferred method definitely is text and e-mail” H-HCP4

“A lot of the times the number that we’re given [to talk to the community physician] is the front desk number which, half the time isn’t answered. If you have the back line, it’s easy to get in touch with them. If you’re just calling the main number and having to leave a message, sometimes it can take a while to get the person you need.” H-HCP37

“Some of the community partners…may not allow any conversation via email… It takes a little while to actually obtain the consent from the family first, and then talk to the service provider at that community rehab center.” H-HCP10

“The policies around email are a little bit more strict than some other agencies. So it is challenging at times, we have to be very careful about what we share via email.” C-HCP6

“The best option would be texting, but unfortunately, we’re not really supposed to be giving out our cell phone numbers … So, that’s where my challenge kind of comes. Sometimes I go through the [school] nurse if it’s something really important, and I can’t get them [parent] by phone, then, the nurse has their work [cell] phone. So, I get that nurse to contact the parent right away.” T14

“[Medical] changes will be made… it happens via fax, …the machine isn’t working, or its busy, and that delays care at times...the fax situation is kind of ancient and I would prefer to have that come through much faster in some other digital form.” T11

Inadequate access to health information

“His medical records to me are a black box. I just started asking for copies of things, cause I have no idea how to access things [health information], or refer back to things later.. . I certainly want access to it [health information]. I wish I could get access to it [health information] easier.” P39

“I’m still trying to deal with getting his medical information. Because, [hospital] won’t give it to me unless I pay for it. I don’t feel like I need to pay to get my son’s medical records…The only way that I’m able to get them now is if I physically call each department and request for them to send it. Otherwise I need to pay to get them all on, like, a disc or paper copied, it’s like 25 cents a paper.”

P56

“I can’t access her chart. I can’t see what’s being written. I should be entitled to have access to her information. But, in order to get that information, it’s hoops and hoops. It takes weeks, if not months, to get. I’ve asked, ‘can I just read her chart on the computer?’ Nope, I’m only allowed to see her chart on a computer with a physician sitting next to me. The only way we can is to go and physically pay for her chart.” P55

“I do not have access to [pediatric electronic health record], so I have nothing. I’d say, 95% of the Emergency physicians do not have [pediatric electronic health record] access. So accessing any kind of pediatric kind of healthcare information is poor.” H-HCP43

“The biggest challenge with community partners is that the record isn’t always the same. When I have a patient at [children’s developmental center], I would love to see the OT assessment that they had recently, we don’t have access to those records...So that creates a little bit of barrier on my end to have the whole picture at all times.” H-HCP2

“You’re at a standstill sometimes, so like, active issues aren’t necessarily managed because I’m waiting to get the plan, cause I don’t want to change something that might have been going well or, I don’t want to try something else, again, because I didn’t know what’s already been tried.” C-HCP41

“[Health record] goes into [principal’s] filing cabinet that’s locked up at the office. It would be super-helpful to be able to just look at it at any point in time instead of having to go, [the] ancient way, go to the filing cabinet, find the file, retrieve the piece of information.” T11

Lack of Partnership in Care

“I’m really the only one who actually knows the full picture on [son]. Everyone knows slices… I am the authoritative source for everything. Unfortunately, it doesn’t get recognized in an official capacity.” P2

“As a parent, it’s exceedingly difficult to make informed healthcare decisions for your child if you don’t know what’s being done. A test has been ordered but I don’t know about it, or a medication has been changed or discontinued. Unfortunately, it happened over and over. It was pervasive. It almost felt like a lack of respect for a parent… I want to know what’s being done.” P55

“[Communication] seems like a big favor. It doesn’t feel like communication with our specialist is something that we’re entitled to. It feels like something special that you’re granted…We felt they [health care team] were actively not listening to us, we would say, ‘A is happening,’ and they’re like, ‘no, we see B.’ You just saw him for 5 min, I spend 16 h a day with him. That was very frustrating.” P39

“Parents know their kids very well, it’s very important for the health practitioner to take them seriously, to actually listen to what they have to say, and not brush them off… It’s important… to give them the facts, so that the family can make the right decision with all the information needed.” P59

“Things like team meetings, I could attend, but I’m not necessarily included. People at [hospital] think about the people at [hospital], they don’t necessarily think about the people out in the community that are part of the team.” C-HCP41

“I have to be the initiator for some stuff, I find, they [medical team] get the information, I don’t find it’s always shared readily with me, there’s not because they’re holding back, they just gets busy.” T14

“It’s just that it doesn’t kind of come up on their radar as something that needs to be given to us so oftentimes, we miss out on paperwork that could be helpful inside their file… [easier access] would benefit the teachers and the children and the families, greatly.” T11