Family-centred care in cystic fibrosis: a pilot study in North Queensland, Australia

Abstract

Aims: The aims were to: (i) examine perceptions of family-centred care of parents of children with cystic fibrosis and healthcare professionals who care for them; (ii) test design and tools in a regional population. Design: Quantitative pilot study of existing questionnaire. Methods: The methods involved were comparative, cross-sectional survey of parents of children with cystic fibrosis and health staff in North Queensland, using “Perceptions of Family Centered Care – Parent” and “Perceptions of Family Centered Care – Staff” questionnaires; and descriptive study of tools. Results: Eighteen staff, 14 parents (78%, 61%); using Mann–Whitney U, showed no significant differences in scores in categories: ‘support’ ‘respect’, ‘collaboration’. Comments about suitability of questionnaires varied, but were largely positive.