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Evolution of Pactster: The findings of our research...
Laptop screen showing spreadsheet with responses to cystic fibrosis exercise survey

Over the last few months, we’ve been carrying out some fascinating research into factors that help and hinder adults with CF to exercise.

We’ve been doing this so that we can make getting and staying active easier and more enjoyable for you, by providing you the right kind of support.

So, what research did we do into exercise and cystic fibrosis?

First, we conducted interviews. We spoke to some of you via video chat to hear about some of your experiences of exercise, asking questions like:

  • What motivates you to exercise?
  • What do you think will happen if you exercised more often?
  • What stops you from doing exercise?
  • Can you tell us about any goals that you have relating to exercise?
  • How do you feel when you exercise?
  • How would you describe your exercise routine?

Then, based on what you told us, we created a survey to validate our results more widely and enable even more of you to have your say.

Within just a couple of weeks, we had 181 survey responses from:

  • 10 different countries
  • 123 females and 58 males
  • 112 of you who met the NHS physical activity guidelines for adults and 69 of you weren’t quite there yet

These interviews and survey allowed us to see the differences in what helps or hinders you to keep active.

What did we discover about your barriers and facilitators to exercising with cystic fibrosis?

We compared the results from people to did not reach physical activity guidelines with those who did. These are shown on the charts below as people who 'exercise less' and 'exercise more', representing people who do less than the NHS recommended 150 minutes of moderate intensity exercise, and those who do 150 minutes or more.

Here’s what we found...

People who do more exercise are more likely to have an exercise routine

They will tend to schedule when they are doing to exercise.

Chart showing that people who exercise more are more likely to have a regular exercise routine

People who do not do as much exercise struggle with the thought of initiating exercise

Even if they felt much better once they had managed to start exercising and really liked the benefits of exercise that they experienced afterwards.

Chart showing that people with cystic fibrosis who exercise less are more likely to say that they struggle with the thought of exercise

People who exercised less felt that exercise was a chore and something that they ‘have to do’

When speaking to us, some of you described exercise as something you "should" do, or have "got to" do. You even referred to it as a "necessary evil".

Chart showing that people with cystic fibrosis who exercise less are more likely to say that exercise feels like a chore

We found that people who didn’t exercise as much felt that their CF prevented them from exercising as much as they wanted

This was mostly down to issues like breathlessness and coughing. You also told us that these issues also sometimes made you feel more self-conscious when exercising around others.

Chart showing that people who exercise less believe cystic fibrosis prevents them from exercising as much as they would like to

We found that people who exercised less were more likely to struggle to set themselves a goal related to activity

However, we also noticed that some of you may have set yourselves goals without realising it, such as aiming to do exercise a certain number of times a week or try a new activity.

Chart showing that people who exercise less are more likely to report struggling to set exercise goals for themselves

Enjoyment also plays a role in how much you are likely to exercise

The more you enjoy exercise, the more likely you are to do more of it…

Chart showing that people with cystic fibrosis who exercise more are more likely to enjoy their exercise sessions

Even though we identified these differences and barriers between people who meet or exceed the minutes of exercise recommended and those who don’t, there were some similarities, too...

The good thing is that:

  • You feel like you have support and encouragement to exercise from the people around you including, friends, family, your CF physiotherapist and your wider CF team
  • You feel like you have a good knowledge of how exercise affects cystic fibrosis
Chart showing that people with cystic fibrosis feel they receive encouragement to exercise from their friends/family, physiotherapist and CF team
Chart showing that people with cystic fibrosis understand how exercise affects their condition

This is amazing news!

However, it’s clear that you all want to exercise more - even those of you that are great at keeping active regularly.

Chart showing that people with cystic fibrosis generally want to exercise more

We want to help you do this!

Helping you to exercise more is why we exist and that’s why we have conducted this research.

Based on these findings, we’ve been investigating some digital solutions that could help you overcome the barriers to exercise that you told us about, especially around creating a routine, setting yourself goals, and making exercise generally more enjoyable.

Stay tuned for more updates coming shortly...

In the meantime, you can get in touch with us at hello@pactster.com or on social media to get involved, share ideas and follow our updates.

Facebook: Pactster

Facebook group: Exercise for Cystic Fibrosis - Pactster

Twitter: @pactster (for general news) or @pactster_CF (for all updates related to cystic fibrosis)

Instagram: @pactster_