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

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). e590-e599.

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Aims and objectives: This study aimed to explore experience 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 utilising 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.

Item ID: 51302
Item Type: Article (Research - C1)
ISSN: 1365-2702
Keywords: cystic fibrosis, family-centered care, rural
Funders: Australian College of Nursing (ACN)
Projects and Grants: ACN Grant 2013
Date Deposited: 15 Jan 2018 22:27
FoR Codes: 42 HEALTH SCIENCES > 4205 Nursing > 420599 Nursing not elsewhere classified @ 100%
SEO Codes: 92 HEALTH > 9202 Health and Support Services > 920210 Nursing @ 50%
92 HEALTH > 9205 Specific Population Health (excl. Indigenous Health) > 920501 Child Health @ 50%
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