Table 1 Main personalised outcomes presented as themes with accompanying sub-themes and quotes

Sense of reassurance

Cognitive reassurance

“I would feel less anxious”

“I would feel less anxious and more reassured”

“I’d feel more reassured in knowing there was a team I could contact”

“I would also feel more confident in general decision making when he becomes unwell”

“knowing more about it would provide reassurance”

“learning more would make me feel more reassured”

Affectionate reassurance

“I’d feel more reassured in knowing there was a team I could contact”

“I would also feel more confident in general decision making when he becomes unwell”

“I would feel less anxious if the team was supportive”

“If I was more reassured I would be able to give the inhalers”

“I need to feel more secure that he will be fine”

Sense of expertise

Education around the condition

“safety and knowledge are most important”

“important is to able to give the inhalers”

“safety and control of the situation are important”

“it is important to know if his wheezing is life threatening”

“I want to have more knowledge about the disease”

“it would provide information on where to go and what to do”

“this would give us more knowledge and would make us less stressed”

“it is important to have knowledge about how serious it can be”

“I need to have a better idea of what this is in order to feel better”

Navigating healthcare services

“it would provide a feeling of knowing where to go and what to do”

“it would provide information on where to go and what to do

Less time off work

Absenteeism

“I need to feel security, time free for work”

“I want to have less days off work and more quality time with the family”

“I need to get more days at work”

“I need more time for work, I have no time for education, I need something simple to have at home”

Effectiveness

“I am very stressed and not able to concentrate at work”

“I need to be able to concentrate at work”

“I need to get more meaningful days at work”

“Important is to have knowledge and good planning and be more able to focus on other things like work”

Family quality time

“I want to get more time with the family”

“I want to have a better life without stress”

“I need not to catch viruses from the hospital”

“I need to have more relaxing days with the kids”

“I need to feel less stressed, have better family time”

“To make life easier, I feel like if I’d have someone to talk to I would feel less worried”

“I need to have less stress and a better quality of life”

“I need to save time and effort and focus on family”

Coordination and continuity of care

“I need one single plan not ten”

“I need a plan for his management that doesn’t change all the time”.

“I need to have a better plan – to know whom to see”

“I want to know that I have a concise plan”

“I want to get what I need from all the doctors/not one here one there”

“I want to see his doctors together”

“I want to get one advice not ten”

“I will have less time to lose if I see his doctors together”

“I need to get one good advice not hundreds”

“I need to know whom to follow the GP or the doctors?”

“I need to feel more knowledgeable, to know which plan to follow”

“I need to get a single opinion, to understand what this is”

“I need to get a good doctor who sees him all the time”

“I need not to go to different doctors all the time”

“I need to get one final plan not different ones by different people”

Mental health well-being

“I need to maintain my mental health wellbeing—I can’t stay calm and I feel always stressed”

“Since he started having the wheeze I feel depressed”

“To feel less stressed and yes to have better mental health”

“As R said to be less stressed, to have a better mental status, not to feel so stressed”

School readiness

“To be able to potty train him earlier—to get him ready to start reception”

“I need to have some time to teach him things—my niece is far more advanced than him”