Table 3

Representative quotes relating to patient/family experience of a child with an acute asthma exacerbation

Decision to seek hospital care“She felt bad, her chest and back hurt a lot, she couldn’t breathe, and when we brought her in, she was breathing directly into her stomach” – Mother of 10 year-old, Argentina
“…when I came to the emergency room, I feel very scared. Not only scared but very worried for him because asthma is not something that is to be taken lightly actually because … the airways block. So very worried. Very scared.” – Mother of 4 year-old, Singapore
“For this time, because she coughed occasionally a few days ago, I did not pay attention to it. Then her cough suddenly worsened, and then followed by asthma.” – Mother of 3 year-old, China
“…because when he was previously hospitalized, I’d brought him to the hospital unconscious and without air.” – Mother of 14 year-old, Argentina
“He seems to be quite responsive to Redipred [Prednisolone] previously and he finally can get better within like 12 hours or 10–12 hours of the first dose, but this time he obviously didn’t. That’s why we’re in here.” – Mother of 4 year-old, Australia
Transit to hospital“Every time we’ve rung for an ambulance… we’ve not been able to get one. Then having to drive here and trying to find somewhere to park to bring him in, every time I’ve just left my car out in the road, which obviously isn’t safe but if they’re not going to let me park underneath in an emergency, what can I do? I can’t park down the road and carry him. I think that’s the most worrying bit is being able to get here.” – Mother of 6 year-old, UK
“I didn’t have the means to get him [child] to the hospital. My husband was at work, and I didn’t have money to get a taxi, so I called my neighbour, and thank God, he brought us to the hospital on his bike.” – Mother of 1 year old, Paraguay
“Everyone in the ambulance were quite reassuring to me. They told me we’re going to arrive in a moment, to be calm. They put the mask on him [child]… It’s better to be in the ambulance, because you don’t need to pay attention to the road and you can be there reassuring him.” – Mother of 9 year-old, Spain
Costs of care“What worries me the most is that I will spend a lot of money again this time… my family is poor and the bills issued to me every day are very painful for me…. Because of my poor economic condition and overwhelming medical bills, it’s very difficult for me to offer the best treatment to my child according to the doctor’s advice.” – Mother of 4 year-old, China
Waiting times“It was really busy in emergency. We would just sit in a little cubicle for several hours before they actually found her a bed to start off with.” – Mother of 8 year-old, Australia
“When I told them she was out of breath, they made me wait a long time.” – Mother of 11 year-old, Argentina
“I don’t think you need to improve anything… When you see the red card, they will see the asthma thing, they quickly send him to observation ward and get his treatment first before we get to see the doctor.” – Mother of 3 year-old, Singapore
Readiness for discharge and length of stay“…as frustrating as it is, we want to get home, but what I am liking is that they won’t send him home unless they’re very comfortable that he is well enough… It’s important for me to get him home, but at the same time it’s good to know that they’re not going to let him home unless they’re happy.” – Mother of 4 year-old, Australia
“I brought him in and they sent me home saturating 89% after three nebulizations.” – Parent of 10 year-old, Costa Rica
Intravenous treatment is a ‘step up’ but is also a distressing experience“100% of the time XXXXXX is going to want to do whatever treatment there is that has no needles, no pinpricks… [when using IV] The first doctor didn’t get it in properly and was pushing and poking around and it didn’t go in and she was screaming. It was all a bit dramatic.” – Parent of 8 year-old, Australia
“Among the treatment methods I know, I prefer the inhaled aerosol therapy. I’m very resistant to intravenous injection, because I think the side effects of injection is great. In addition, it costs a lot.” – Mother of 4 year-old, China
“I’m quite happy for them to try anything so we can get home quickly because he hates being in, but I know he is very reluctant to have the cannula again, so his opinion will be different to mine. I think he would prefer just nebulizers and oral medicine, not IV.” – Mother of 10 year- old, UK
“I really didn’t like doing the IV thing. I’d rather do something else.” 10 year-old, UK.
Intensive care unit/high-dependency unit admission“…in that moment when they told me that she was going to go there (ICU), I imagined that she was very ill. Yes, a little uncomfortable, the uncertainty of now knowing, “Why is she going there?”… when they said it was intensive care, it was like saying, “This is serious”.” – Parent of 5 year-old, Costa Rica
“I guess the previous experience would help because you know what it is, but you also don’t know how it’s going to evolve, the uncertainty and worry are always there (in ICU). – Mother of 9 year-old, Spain
“They explained that to us very well the first time he was in the ICU. We didn’t realise the seriousness of the situation. They immediately made it clear to us that something was wrong and that we had to act quickly. When the critical moment passed, they told us we were at another point. It’s important to stay informed at all times.” – Father of 9 year-old, Spain
Satisfaction with care is associated with effective communication and frequent reassessment.“I find that a lot of the time it’s between parent and doctor when he’s actually old enough to discuss his care as well.” – Mother of 10 year-old, UK
“We were treated very quickly and very well. They asked XXXXXX questions all the time, how he was doing and explained what they were going to do to him… The fact that they explained what was going to be done to him reassured him: “It’s difficult for you to breathe”, “Don’t worry”, “We’re going to put on the oxygen mask so you can breathe better”, “I know you don’t want to”… They took good care of him and were very careful about the fact that he is a child and needs his time.” – Mother of 9 year-old, Spain
“I think consistency … I think there should be a universal—if it’s for severe chronic asthma, a clear plan when you’re going across the board for treatment and aftercare because I find that it’s different advice from different consultants, different opinions.” – Mother of 10 year-old, UK