In 2018 we conducted our biggest ever insight survey of our CF community. The purpose of the nationwide survey was to gather information about:
A literature review was undertaken to find examples of other wellbeing and CF support needs surveys which allowed us to compare our results to other populations of PWCF and the wider New Zealand population.
The survey went to 405 families (of an estimated 505 PWCF in New Zealand). 209 families provided feedback, a response rate of 52% which is exceptionally good and provides very reliable data about the wellbeing, quality of life, our service and aspirations of our CF community.
The results showed that the self-reported health status of both PWCF and parents was lower than the wider New Zealand population. The better the health of PWCF and parents, the more likely they were to report they were satisfied with life. Both PWCF and parents’ satisfaction with life was also lower than the wider population. Parents with very young PWCF were most likely to report being less satisfied with life. There was no significant differences between the self-reported health status or satisfaction with life by gender or age for PWCF.
There was a statistically significant difference in the extent to which CF impacts on people’s lives by region: PWCF who live outside the main treatment centres (i.e. outside Auckland, Wellington and Canterbury) were absent more often from school, work or other daily activities due to illness or treatments compared with PWCF living in the main centres.
Half the respondents said our services were ‘extremely’ or ‘very’ helpful, particularly fieldworkers, grants and information resources.
Fieldworkers were people they know and trust who were connected to the wider CFNZ organisation, CF community and health care services and who provided emotional and practical support. Information resources informed service users about CF, what they could do to help themselves and the different kinds of resources, services and supports available. Grants made it possible to purchase or pay for equipment or services that they may have otherwise struggled to afford.
The services rated as most important, rather than most helpful were advocacy, building a strong CFNZ and supporting CF research.
The feedback about what people wanted life for PWCF to be like in five years showed clear trends. They wanted:
The results from the survey have provided our organisation for the first time with qualitative data about the health and wellbeing of our community. We have used the survey findings to adapt and improve our service provision and to focus our strategic and annual plan on the areas identified as being important to PWCF.
We continue to incorporate the recommendations to advocate for better care and treatment of PWCF in New Zealand and to ensure we meet the needs of our CF community. A recent example involves the use of the findings in a submission to the Health and Disability Systems Review and presenting the findings at the CF Clinical Forum in Auckland.
We will repeat the survey every 2–3 year to see if we’ve made any improvements in decreasing the impact of CF on people’s lives.