Thanks to better treatments and improved quality of life, people with pwCF in Ireland are now able to live far more independent lives than would have been possible a few decades ago.

In 2016, CFI set up an Independent Living Sub-Group to look into how people with CF live independently. This included commissioning research based on two surveys — one carried out in 1998 and another in 2017.

The results were very positive. They showed that life has changed greatly for adults with CF over the past 20 years. With continued investment in healthcare, better models of care, and access to new treatments, people with CF are living longer, healthier, and more independent lives.

However, Ireland is still behind other EU countries in fully supporting independent living for people with disabilities, including those with CF. Independent living is recognised in Article 19 of the UN Convention on the Rights of People with Disabilities, which Ireland has not yet officially approved, though the government has said it plans to do so soon.

Good CF care is central to making independent living possible.

Key findings from the research:

1. More adults with CF are living independent, fulfilling lives.

   • In 1998, only 8% of adults with CF were married, compared with 26% in 2017.
   • In 1998, 87% were single; by 2017, that had dropped to 39%.
   • In 2017, 26% of adults aged 21 and older were parents — a question that wasn’t even asked in 1998.

2. People with CF are living longer and healthier lives than they were 20 years ago.

3. CF can still affect daily life, sometimes interrupting education, training, or work for a few weeks at a time.

4. Living arrangements have changed, with more people with CF living independently.

5. More people are completing third-level education, though CF can still make it harder to keep up with studies.

6. Employment opportunities have improved, with more people working full-time or part-time, and employers being more understanding.

7. Increased car ownership, independence, and travel show a strong move toward independent living.

This CFI report is one of the first in the world to look at independent living and CF not just from a medical view, but also from social and economic perspectives.

It’s an encouraging time for people with CF and their families in Ireland. While challenges remain, one of the best developments in recent years is that most adults with CF are now living longer, healthier, and more independent lives than ever before.