Melanie Jessup1,2, Wendy Smyth3,4,5, Gail Abernethy6,7, Linda Shields8,9, Tonia Douglas10,11. 1. Australian Catholic University/Metro North Hospital and Health Service, Brisbane, QLD, Australia. 2. Queensland Children's Medical Research Institute, The University of Queensland, Brisbane, QLD, Australia. 3. Townsville Hospital and Health Service, Townsville, QLD, Australia. 4. College of Healthcare Sciences, Townsville, QLD, Australia. 5. James Cook University, Townsville, QLD, Australia. 6. College of Medicine and Dentistry, Atherton, QLD, Australia. 7. James Cook University, Atherton, QLD, Australia. 8. Charles Sturt University, Bathurst, NSW, USA. 9. School of Medicine, The University of Queensland, Brisbane, QLD, Australia. 10. Department of Respiratory and Sleep Medicine, Lady Cilento Children's Hospital, Brisbane, QLD, USA. 11. Faculty of Medicine, Clinical Unit, The University of Queensland, Brisbane, Queensland, Australia.
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 () 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.
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 () 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.
Authors: Rhonda Szczesniak; Jessica L Rice; Cole Brokamp; Patrick Ryan; Teresa Pestian; Yizhao Ni; Eleni-Rosalina Andrinopoulou; Ruth H Keogh; Emrah Gecili; Rui Huang; John P Clancy; Joseph M Collaco Journal: Expert Rev Respir Med Date: 2020-04-26 Impact factor: 3.772