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• W800647944 abstract "Australia is a vast country, its capital cities sited around its coastline where all primary cystic fibrosis (CF) treatment centres are located. However, many families with a child with CF live in rural or remote areas, often thousands of kilometres away. Little is known of the impact on their daily lives of living far from their main health resource. Objectives To improve the delivery of family centred care (FCC) to children with CF and their families who live distant from main treatment centres, and to understand what such distances mean to the care they are able to access. Method Semi-structured interviews (n = 15) were conducted with parents of a child with CF who live in the Townsville Health Service region, Queensland. Results Thematic analysis revealed parents seeking certainty and continuity in the uncertain realm of CF, their issues not unlike those of their city counterparts, but exacerbated by their sense of distance and isolation. So for example, while change of care-team is difficult anywhere, the impact is magnified when stretched over distance. Parents discussed having to establish rapport, build trust and tell their story again. especially when seeking to feel part of the visiting outreach team from the tertiary centre. Participants conveyed strategies and strong resolve, such as choosing to drive fifty minutes to a known medical centre to avoid a local one, which might be seen as insufficiently trustworthy or knowledgeable by parents who, by contrast, clearly are. Conclusion Insight into this unique milieu from a parental perspective is required so that care can accommodate the challenging environment and be planned around the whole family." @default.
• W800647944 created "2016-06-24" @default.
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• W800647944 date "2015-06-01" @default.
• W800647944 modified "2023-09-30" @default.
• W800647944 title "269 Living with cystic fibrosis in a remote or rural area" @default.
• W800647944 doi "https://doi.org/10.1016/s1569-1993(15)30443-4" @default.
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