Table 5.

Caregiver Perspectives about ACTIV - Focus Group Themes and Representative Quotes

Themes - Subthemes	Selected Illustrative Quotes
Facilitated Communication with Medical Team	“Then you have to wait until the provider is in the office to call back. Or we, even with MyChart, there’s times there might take a day or so to get back to us, things that they’re not real emergencies…so we’re not having to worry about, oh, it’s going to take a while for us to get a response from someone.” “The last 364 days have sucked. And then they say, he seems to be doing good right now. But if I saw or communicated with that person maybe on a monthly basis, I could relay the messages on his condition, and the doctor could give us a little bit more feedback and get a better understanding of how he was doing.”
Global health assessment	“My decision was based on how I felt my daughter was doing at that time. So, I was taking into consideration her wellbeing at that time. So, if she had any type of cold or anything and it had been a few days and it wasn’t improving, that’s what I would base my response on. “Si es que mi niño ha estado enfermo en eso días y tenía síntomas que ya se va enfermar que no está como normalmente jugando o comiendo bien. Si ya lo miro como todo tranquilito y eso entonces me iba a pensar que ya le voy a comenzar con el uno y el dos.” (If my son has been sick those days and he has symptoms that he will soon be getting sick, that he’s not playing or eating the way that he normally does. If I then see him back to normal/peaceful and in that moment I would have thought that I would start him with a one or two.)
Dynamic Mode of Care - Unpredictability	“I think the only problem was with our daughter, things change for her so quickly that I consistently answered five because she could be fine one day, and then be in the hospital the next.” “Para mí era un diez o un nueve, digo porque yo no sé el día de mañana si él va estar bien o no.” (For me it was a ten or a nine, I’d say because I don’t know if tomorrow he will be fine or not.)
Dynamic Mode of Care - Interventions	“I’m texting 10, 10, 9, 9, and that just goes into somebody’s folder and database and they, okay, he’s doing great. But if I start trending down, all of a sudden, I was nine, and then the next week I was 8, and then 7, and then 6, is someone reaching out saying, hey, how come you feel this way? What’s going on?” “I think its slowly reasonable to say that if a person were responding with negative results, or if you know a response of 1,2, or a 3 on a daily basis, then there obviously needs to be some type of a follow-up. And if a simple phone call from a doctor reach out to say hey what’s up, what’s going on, you know how’s your child doing, what’s the problem would be great.”
Dynamic Mode of Care - Individualized Care	“Mas o menos en las necesidades de cada niño. Y los ninos que están un poco más delicados, mandarles más seguido para que ustedes se den cuenta del niño más o menos. Es una forma de apoyo para los papas, especialmente porque a veces uno si siente. Cuando tú tienes un niño especial aprendes a junto a todo momento. A todo momento estas aprendiendo.” (More or less on the necessities of each child and the children that are a bit more delicate, send them more frequently so that you all can know about the child more or less. It’s a form of support for the parents, especially because sometimes you feel it when you have a child with special needs you learn at every moment.) “Hay niños que, aunque ya son grandes tienen sus defensas muy bajas y también tendría que ser más frecuente porque por ejemplo los de asma hay un tiempo que se enferman mucho.” (There are children that even though they are older have low defenses and will also need to be more frequent because for example, those with asthma, there’s a time when they get sick often.)
Increased Support Builds Parent Confidence	“Si, porque yo antes todo me daba pena preguntar al doctor. Mi hermano siempre me dice, ‘tienes que apuntar a preguntar esto…’ Esto de ver eso de hospitalizaciones, evitar cosas así, o cómo prevenir me hizo ser más preguntona. Fue como dice una motivación.” (Yes, because before I was too shy to ask the doctor any questions. My brother would always tell me, ‘You have to take note of asking this question… ‘ Having seen this about hospitalizations, avoiding it, or how to prevent made me ask more questions. It was what you call a motivation.) “Por ejemplo, la otra vez el niño cuando me entro ese texto tenía mucha fiebre y yo pues e otro niño tenía vómito. Tengo cuatro niños y estaban los tres malitos. Y a ver que ago. Y me entro el texto y yo estaba frustrada y cuando lolee, tengo que evitar la hospitalización y como que me levante y me puse a bajarle la fiebre y yo lo tome como una motivación para mí. Como si fuera alguna terapia.” (For example, the other time that I received a text, my child had a lot of fever and I, well, another child was vomiting. I have four children and three were sick. And I didn’t know what to do. And I received a text and I was frustrated, but when I read it, I have to avoid the hospitalization and it was as if I was encouraged and I started to lower their fever and I took it as a motivation for me. As if it were some sort of therapy.)