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.
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.
A qualitative, phenomenological design using a Van Manen (1990) approach.
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.
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.”
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.