Family-centred care for families living with cystic fibrosis in a rural setting: A qualitative study

Abstract

AIMS AND OBJECTIVES: To explore experiences of family-centred care among parents of children with cystic fibrosis living far from tertiary treatment centres and to understand what such distances mean to their care. BACKGROUND: Australia is a large continent. However, many families with a child with cystic fibrosis live in regional areas, often thousands of kilometres away from the primary treatment centres located in Australia's coastal capital cities. DESIGN: A qualitative, phenomenological design using a Van Manen () approach. METHODS: Individual, semi-structured interviews were conducted with parents (n = 7) of a child with cystic fibrosis who lived in regional Australia. Thematic content data analysis was used. RESULTS: The essence of the participants' experience was their seeking certainty and continuity in the changeable realm of cystic fibrosis while negotiating a collaborative approach to their child's care. Five core themes and two subthemes were identified: "Daily care: a family affair," including the subtheme "Accessing expert care"; "Family-centred care: seeking inclusion"; "Control versus collaboration: seeking mutual trust," with the subtheme "The team who grows with you"; "Future projections"; and "The CF circle." CONCLUSION: Some concerns are not unlike those of their city counterparts, but can be intensified by their sense of distance and isolation. RELEVANCE TO CLINICAL PRACTICE: Insight into this unique milieu from the parents' perspective is requisite so that care is appropriate to such a challenging environment and incorporates the whole family.L6229133342018-07-10 <br />