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

Journal article


Jessup, Melanie, Smyth, Wendy, Abernethy, Gail, Shields, Linda and Douglas, Tonia. (2018). Family-centred care for families living with cystic fibrosis in a rural setting: A qualitative study. Journal of Clinical Nursing. 27(3-4), pp. e590 - e599. https://doi.org/10.1111/jocn.14105
AuthorsJessup, Melanie, Smyth, Wendy, Abernethy, Gail, Shields, Linda and Douglas, Tonia
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.

Keywordscystic fibrosis; family-centred care; rural
Year2018
JournalJournal of Clinical Nursing
Journal citation27 (3-4), pp. e590 - e599
PublisherWiley-Blackwell Publishing Ltd.
ISSN0962-1067
Digital Object Identifier (DOI)https://doi.org/10.1111/jocn.14105
Scopus EID2-s2.0-85042275598
Page rangee590 - e599
Research GroupSchool of Nursing, Midwifery and Paramedicine
Publisher's version
File Access Level
Controlled
Place of publicationUnited Kingdom
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https://acuresearchbank.acu.edu.au/item/8q41v/family-centred-care-for-families-living-with-cystic-fibrosis-in-a-rural-setting-a-qualitative-study

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