Family-centred care in cystic fibrosis: a pilot study in North Queensland, Australia.
Wendy Smyth, Gail Abernethy, Melanie Jessup and 2 others
PMID 28694981WHAT IT FOUND
No significant difference was found between parent and staff perceptions of family-centred care in a small cystic fibrosis pilot.
Both groups gave the lowest scores for support, including whether staff understand the child's individual needs and the family's situation.
Key findings
01There were no statistically significant differences between parent and staff groups on the respect, collaboration and support sub-scales.
02Both groups had their lowest median scores on the support sub-scale, which includes whether staff know the child's individual needs and understand what the family is going through.
03No participant said a questionnaire question did not make sense or was similar to another question.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
Only 18 staff and 14 parents took part, and they were purposively selected or recruited, so this is a pilot and may not represent other cystic fibrosis services. Children were not included, so the study does not capture children's own views. The small sample may explain why parent and staff scores were similar and why overall scores were lower than in a larger Australian study. Because cystic fibrosis is rare and the region is remote, the paper gives limited demographic detail about families and the setting. The study measured perceptions and questionnaire usability, not health outcomes or whether family-centred care improved care.
Declared interests
The authors declared no conflict of interest.
The easy way to misread this
Do not read the lack of significant difference as proof that parents and staff have the same experience of care. This was a very small pilot survey, and the lowest scores were for support.