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
Authors | Jessup, Melanie, Smyth, Wendy, Abernethy, Gail, Shields, Linda and Douglas, Tonia |
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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. |
Keywords | cystic fibrosis; family-centred care; rural |
Year | 2018 |
Journal | Journal of Clinical Nursing |
Journal citation | 27 (3-4), pp. e590 - e599 |
Publisher | Wiley-Blackwell Publishing Ltd. |
ISSN | 0962-1067 |
Digital Object Identifier (DOI) | https://doi.org/10.1111/jocn.14105 |
Scopus EID | 2-s2.0-85042275598 |
Page range | e590 - e599 |
Research Group | School of Nursing, Midwifery and Paramedicine |
Publisher's version | File Access Level Controlled |
Place of publication | United Kingdom |
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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