Exemplary Quotes Supporting the Major Categories and Subcategories

CategorySubcategoryExemplary Quote
Category 1: Role of the familial caregiver in making transfer decisionsConflicts and disagreements“I think that was unfair. You know, that I had to come and argue in order to get my son to where he needs to be.” (familial caregiver)
Engaged familial caregivers facilitating the transfer“I was exchanging some e-mails with the nurse coordinator at the other facility and letting her know what was going on and my attempts at making sure people were communicating.” (familial caregiver)
“We got an occasional call where an emergency room typically referred to [hospital] and they chose to refer to [our hospital] because the family asked.” (accepting physician)
Importance of involving the familial caregiver“I think that it should be ‘this is where we are thinking of sending you; how do you feel about that?’ Not necessarily up to the parent, but I think the parent should have some say in it.” (familial caregiver)
“I like to give families, if I am sending a kid, choices that are within reason, as to what is appropriate, medically appropriate choices because transportation is usually a barrier for a lot of families.” (referring physician)
Category 2: Addressing physician awareness of families’ resource needsChallenges as result of limited resources“I am a retiree and my funds are like deteriorated and it was hard for us to get down there.” (familial caregiver)
“I had some more kids here at the house…it was difficult for us to go back and forth.” (familial caregiver)
“They are going to this other hospital that is far away and the fears that the parents have in terms of like ‘okay, who is going to take care of my kids at home when I drive here and do I have to follow them in the ambulance; can I go in the ambulance’…trying to figure out their own logistics really is a challenge for parents.” (referring physician)
Value of receiving services to minimize the burdens“The social worker, oh they were so helpful…they had food cards to get food in the cafeteria and gas cards and they made it so we could feel better so we could be there with my son.” (familial caregiver)
Lack of attention to resource needs“[Patients and their families] can be understandably anxious about being transferred and transported…not knowing how they are necessarily going to be transported back home, because that is not usually addressed in the transport process.” (accepting physician)
“We will have these families who have to come back sometimes for 3 or 4 different appointments and each appointment is on a different day…patients have to come back for a really long drive for a 15 min appointment and I wish there was a good telehealth option for that.” (accepting physician)
Need for greater physician awareness of the burdens“A lot of attendings have no clue—like how much this is impacting the families and how much it is costing them; it is not really something taken into consideration and maybe if there was more learning from a better aspect of what you are asking of families.” (accepting physician)
“I wonder if there was just better teaching across the spectrum about transfers and how they can be done and kind of what—how much things cost and what families are paying for.” (accepting physician)
Category 3: Communication with the familial caregiverEffective communication“Well basically if [physicians] communicate with me it is going to go well. If I don’t know and have to keep asking questions, we are not off to the right start; I think informing a parent of what’s going on or just communication plays a big role in everything.” (familial caregiver)
“Being able to know what is going on is probably the biggest thing because you just found out your child has a serious emergency going on right now and your head is spinning, your brain is going a 1000 miles an hour; is he going to be okay, is he not going to be, so just knowing, just knowing what is going on is really—it almost helps with the sanity of the parent.” (familial caregiver)
“Every time I used [telemedicine] where I was looking at a patient at the emergency department (ED), the referring ED, that it was extremely helpful because they could see me. It was a 2-way communication, families could see me; they could see what I looked like if I was the accepting doctor; they knew I was a pediatrician and often they were at a facility or an ED where there was no pediatrician; so that was often very reassuring to parents.” (accepting physician)
Breakdowns in communication with familial caregivers“I didn’t know if they were going to do surgery the same night or if they were going to do it the next day and I didn’t feel like I was much included in anything…I didn’t get much information.” (familial caregiver)
“Not everyone communicates it very well to the parents or the families and sometimes they don’t understand what is going on and why.” (referring physician)
“They don’t know exactly what the plan is or why they are being transferred or why it is an emergency or things like that.” (accepting physician)