Table 4 Themes
Theme | Subthemes | Quotations |
|---|---|---|
“We know our child best” | “They’re the medical professionals, and we’re the professionals of our child.” | |
Living with uncertainty | “…living life one day at a time. You can never think about what’s going to happen next.” | |
Hospital care needs are similar to home care needs | “If she’s well enough, I’m going to bring her home... If not, she stays [in the PICU]. I can’t leave her [on the ward], where there’s less observation than if I were watching her.” | |
When expertise collides | Parents and health care professionals | “It’s like, ‘I’m the health care professional, you’re just a parent.’ I might not have their professional training… but I do this every day, 2–3 times per day with my child.” |
Between health care professionals | “…a doctor often won’t ask for help from another doctor” | |
Negotiating caregiving boundaries | “…there’s a confidence that needs to be established. When the nurse sees you do the right things at the right times, she is more inclined to let you go” | |
The importance of being known | “As [staff] got to know us, they saw that we know [our child] very well… so they came to look for us when they were ready to talk about her [in rounds]” |