Family‐centred care for families living with cystic fibrosis in a rural setting: A qualitative study. Issue 3 (13th December 2017)

• Record Type: Journal Article
• Authors: Jessup, Melanie; Smyth, Wendy; Abernethy, Gail; Shields, Linda; Douglas, Tonia
• Is Part Of: Journal of clinical nursing. Volume 27:Issue 3/4(2018)
• Page Start: e590
• Page End: e599
• Publication Date: 2017-12-13
• Subjects: cystic fibrosis -- family‐centred care -- rural; Nursing -- Periodicals; Clinical medicine -- Periodicals; 610.7305
• DOI: 10.1111/jocn.14105
• Languages: English
• ISSNs: 0962-1067

Abstract

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 (1990 ) 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.