TABLE 3

Participant quotes

Example 1	“It is the reason I am still alive. Consistent exercise has been a life saver. One of the most important parts of my treatment plan” (Rebecca, pwCF, 36–60 years, USA).
Example 2	“It makes me feel like I can beat CF” (Chloe, pwCF, 19–35 years, USA).
	“If we do exercise daily then we are none other than normal people” (Paul, pwCF, 19–35 years, UK).
	“As a youngster I liked doing exercise because it was not ‘medical’ but something I could do that I enjoyed, helped me feel normal and bond with peers and I knew it was good for me” (Daniel, pwCF, 19–35 years, New Zealand).
Example 3	“As much as I logically understand how important it is, it's not always enough to get me moving physically” (Claire, pwCF, 19–35 years, USA).
	“There isn't a big enough reward to be more active yet. She is at a good weight and feels healthy. Doing something else with her time is more rewarding than exercising” (Erica, parent/caregiver, UK).
	“I know logically I need to help my child be healthy, but I just don't know the best way to keep us both motivated” (Tina, parent/caregiver, USA).
Example 4	“I weed my garden and walk my dog 5 days a week about a half mile” (Jessica, pwCF, 36–60 years, UK).
Example 4	“I train in a gym every day. I take one rest day in every 10 or so” (Mark, pwCF, 19–35 years, UK).
Example 5	“It is hard sometimes when people are staring at me in [fitness] class because I cough a lot” (Kate, pwCF, 13–18 years, UK).
Example 5	“When you become less well (e.g. an infection or just a blip) it's a downwards spiral: you don't have the energy to do the exercise when you need it most, and as you are not exercising then restarting becomes more difficult. With CF being so unstable this constant cycle of working hard to just get unwell and lose your gains and have to start all over again – that's tough to keep picking yourself up again to start from the beginning all over” (Isabelle, pwCF, 19–35 years, UK).
Example 6	“My daughter loves gymnastics and soccer, but we can't afford the cost” (Justine, parent/caregiver, USA).
Example 6	“We fear group activities with mixing he could get ill” (Adam, parent/caregiver, UK).
Example 7	“We had to explain to school that exercise is at times going to be prioritised over homework in order to keep her well” (Louise, parent/caregiver, UK).
	“I fully believe my son would not be here if I hadn't started to run with him years ago” (Jason, parent/caregiver, USA)
	Enjoyment. It can be seen as a chore, something they HAVE to do, the difficulty is keeping it enjoyable (Karen, parent/caregiver, UK).
Example 8	“[Information is] based on exercise test results, disease severity and patient preference” (Jennifer, HCP, UK, combined).
Example 8	“[We] help them to explore and find something that they like doing, find something with friends to make it social, how to fit into their already busy schedule” (Grace, HCP, Australia, paediatric).
Example 9	“We advise a mixture of cardio and strength training” (Isla, HCP, UK, adult)
	“Aiming 60 min of activity/exercise daily” (Charlie, HCP, UK, paediatric).
	“Aiming for minimum of 30 min of moderate- to high-intensity of physical activity five times a week” (George, HCP, Australia, paediatric).
	“Aim to exercise (20–30 mins per day) 5 days a week. Also “micro” episodes of exercise are also good for you (e.g. taking stairs rather than lift, parking an extra block away and walking, etc.)” (Mia, HCP, New Zealand, combined).
Example 10	“[We provide] gym with many activities for in- and out-patients (e.g. table tennis swing ball, traditional gym equipment, weight training, etc.). Dance and Wii fit activities in in-patient rooms. Yoga and personal training with personal trainers via video link. Treasure hunt around the hospital. Community visits from personal trainer with specific plan. Support to start using community facilities in patient's location and including accessing finance to support this where necessary. Emphasis on patient choice and lifestyle. Bikes and Xbox for exercise in all in-patient rooms” (Oscar, HCP, UK, adult).
Example 10	“[PA is] currently not part of standard care” (Lily, HCP, Canada, paediatric).
Example 11	“[We need] dedicated exercise time and skills - preferably by an exercise physiologist” (Helen, HCP, UK, paediatric)
Example 11	“More support from local gyms offering training packages at reduced rates… Some children don't like gyms so maybe more support from leisure centres to offer help with other children's classes - dance/roller skating/trampolining etc.” (John, HCP, UK, adult).
Example 12	“Where do I begin? Ha!” (Marie, pwCF, 36–60 years, USA)
	“I would like to know more about specific exercises that are most beneficial to me” (Jane, pwCF, 19–35 years, USA)
	“I want to know what I can do with my child to help them live longer. “Be active” is not a satisfactory answer anymore” (Emily, parent/caregiver, UK).
Example 13	“It's not discussed nearly enough. It's just a ‘are you exercising’ and that's it” (Amy, pwCF, 36–60 years, USA)
	“Clinic is rushed. Exercise is only mentioned if we bring the subject up. All physios want is a quick cough swabs and FEV₁ and FVC results” (Ryan, parent/caregiver, UK).
	“Needs more specialised advice for sedentary parents, saying your child needs to be active isn't enough as neither of us have exercised since primary school” (Gemma, parent/caregiver, UK).
Example 14	“Our hospital has no way to exercise in-patients. No exercise room, no playground. Rules keep us inside our room. It's terrible. If exercise is important, our team and physical environment at the hospital needs to support that” (James, parent/caregiver, USA).

Quotes are followed by pseudonyms, whether the respondent is a pwCF, HCP or parent/caregiver, age bracket, and location. Quotes from HCP are followed by “paediatric” “adult” or “combined” to indicate the type of clinic population. CF: cystic fibrosis; pwCF: people with cystic fibrosis; HCP: healthcare professionals; FEV₁: forced expiratory volume in 1 s; FVC: forced vital capacity.