Table 3 Qualitative analysis
Overarching category | Question and response | Quotes |
|---|---|---|
Semi-structured interview responses for children (n = 7) | ||
Attitudes prior to study | Reason(s) for participating • Doctor recommendation (1) • Personal reasons (1) • Research reasons (3) • Do not know (2) | “My son is out of breath every morning and his eye are always yellow” |
Prior knowledge about treatment • None (6) • Knowledge from previous experience (1) | “Sometimes when he has an asthma attack he uses the oxygen” | |
Experience of treatment | Cons of APAP or oxygen • Issues with machine apparatus (4) • Physiological side effects (1) • Uncomfortable sensations (1) | [APAP] “Sometimes it [the mask] keeps coming out and you have to put it back so it was just a bit problematic” [APAP] “Need to take it [the machine] off to breathe” |
Changes in symptoms or day-to-day life • None (4) • Physical differences (1) • Alertness/consciousness differences (3) • Sleep patterns: – (negative) (1) | [NOT] “…eyes was clear or very white… it wasn’t last for longer all day, but for a few hours” | |
Experiences with the machine | Difficulties using the machine • Yes (0) • No (7) | |
Post-treatment thoughts | Most preferred machine • APAP (4) • NOT (3) | |
Advice for future users • Recommendation based on own preference (2) | ||
Advice for researchers • Changes to machines (1) • Changes to protocol | [APAP] “Some people don’t have much space, so to make it secure would be hard” | |
Semi-structure interview responses for adults (n = 9) | ||
Attitudes prior to study | Reason(s) for participating • Doctor recommendation (3) • Personal reasons (2) • Research reasons (1) • Help others (1) • Personal and research (2) • Personal and help others (2) • Do not know (1) | “Benefit me now or in the future and other sickle patients… thought the trial could possibly help in the future if I need it or somebody else needed that kind of treatment.” “Always willing to help with the advancement of medical research” “I would really and truly hope it would benefit the sicklers behind me…Cause for myself.. I think I am long over the age now” “for the first time I was going to get/receive something in return for doing the study” |
Prior knowledge about treatment • None (7) • Knowledge from previous experience (2) | “I know oxygen calms you down when you take injections and stuff like that” | |
Expectations of study • None (5) • Help with sickle cell symptoms (3) • Help with sleep (2) | “Oxygen levels would be better and help manage my pain” “Figure they [the machines] would help me during the night” | |
Concerns of study • None (10) • Health (0) • Social (1) | “My concern is that it [the APAP machine] would fall and wake everyone” | |
Experience of treatment | Overall experience • Indifferent (2) • Positive (5) • Negative (2) | |
Pros of APAP or oxygen • Physiological factors (2) • Technical factors (7): - APAP (5) - Oxygen (2) • Overall mood (4) | [APAP] “It was a bit more intelligent in regards to... it would compensate for any air loss that you was breathing in” [APAP and NOT] “made me feel more relaxed” [NOT] “…especially at winter, in the night when you feel funny and your breathing is funny. It’s when you have it in the bedroom before the ambulance comes. That equipment, you can put in your mouth.. and that will help you oxygen levels as well before the ambulance arrives…and then they can give you more assistance to get to the hospital”. | |
Cons of APAP or oxygen • Issues with machine apparatus (11) - APAP (6) - Oxygen (7) • Physiological side effects (3) - APAP (1) - Oxygen (2) • Uncomfortable sensations (1) • Social factors (1) | [APAP] “The mask over my face is a bit restrictive for moving around” [NOT] “The noise the machine made was louder” [APAP] “Made my throat a bit dry and it felt like… it feels that way… like I am catching a cold” [APAP] “I felt like I was suffocating” “I think it was just in terms of a family getting used to the machine” | |
Changes in symptoms or day-to-day life • None (4) • Physical differences (5) - Positive: (4) - Negative: (1) • Alertness/ consciousness differences (6) - Positive: (5) - Negative (1) • Sleep patterns (13) - Positive: (10) - Negative: (3) • Eating pattern (1) | [APAP and NOT] “I didn’t have as many headaches [in the morning]” [APAP and NOT] “I wasn’t tired during the day” [NOT] “It felt when the room was hot and stuffy, I was still able to get a good oxygen supply”. [APAP and NOT] “I was able to get more sleep and uninterrupted sleep. Sometimes without the machine I will wake up in the middle of the night because my mouth is dry or something like that. With the machine, none of that happened”. [APAP] “Sometimes I felt like I couldn’t sleep through the night completely… But as the days got by, I got used to it.” | |
Experience with the machine | Difficulties in using the machine • Yes (0) • No (9) | [APAP] “Very easy. Easy to manage. Light machine… no problems” [NOT] “No it’s a very simple machine. You just press the button once, press it again and you configure it once and it stays like that” |
Post-treatment thoughts | Most preferred machine • APAP (6) • Oxygen (3) | “The mask is more comfortable to sleep [APAP] with at night. With the other one [NOT] the mask is too big... it was hard for me to sleep.” |
Advice for future users • Recommendation based on own preference (7) • None (2) | ||
Advice for researchers • Related to machines (5) • Related to protocol (2) • None (2) | “Interface for pain diary is primitive” “[make the mask] more comfortable to wear and sleep with at night.” [NOT] “Would take a lot longer to get used to” | |
More questions • About questionnaire (1) • Related to machines (1) | ||
Overall experience with pain diary | • Positive (9) • Other (2) | “If I was having a bad day, it did ask more questions but I think that was fine… the way it is” “the interface… the actual thing that you fill out.. it does look slightly… primitive I would say….it doesn’t really matter realistically… but you want a nicer interface” “I had no incentive to fill in the pain diary when I was pain-free” |