Melanie Jessup1, Tonia Douglas2, Lynn Priddis3, Cindy Branch-Smith4, Linda Shields5. 1. Australian Catholic University School of Nursing, Midwifery and Paramedicine/Prince Charles Hospital, Brisbane, Queensland; Queensland Children's Medical Research Institute, The University of Queensland. 2. Lady Cilento Children's Hospital, Queensland; Curtin University, Western Australia. 3. School of Psychology and Social Science, Edith Cowan University, Western Australia. 4. Edith Cowan University, Western Australia; Telethon Kids Institute, University of Western Australia. 5. Charles Sturt University, NSW; Medical School, The University of Queensland. Electronic address: lshields@csu.edu.au.
Abstract
UNLABELLED: Following diagnosis with cystic fibrosis (CF), initial education powerfully influences parental adjustment and engagement with care teams. This study explored the education needs of ten parents following their infant's diagnosis with CF via newborn screening. DESIGN AND METHODS: Phenomenological study using van Manen's approach, with ten participant parents of children 1-8 years with CF. RESULTS: Parents recounted varying degrees of coping with information they acknowledged as overwhelming and difficult. For some it was too much too soon, while others sought such clarity to put CF into context. CONCLUSIONS: Participants delivered insight into their engagement with their education about CF. Their recommendations for appropriate context, content, format and timing of delivery enable development of education that is accurate and relevant.
UNLABELLED: Following diagnosis with cystic fibrosis (CF), initial education powerfully influences parental adjustment and engagement with care teams. This study explored the education needs of ten parents following their infant's diagnosis with CF via newborn screening. DESIGN AND METHODS: Phenomenological study using van Manen's approach, with ten participant parents of children 1-8 years with CF. RESULTS: Parents recounted varying degrees of coping with information they acknowledged as overwhelming and difficult. For some it was too much too soon, while others sought such clarity to put CF into context. CONCLUSIONS:Participants delivered insight into their engagement with their education about CF. Their recommendations for appropriate context, content, format and timing of delivery enable development of education that is accurate and relevant.
Authors: Sarath C Ranganathan; Graham L Hall; Peter D Sly; Stephen M Stick; Tonia A Douglas Journal: Am J Respir Crit Care Med Date: 2017-06-15 Impact factor: 21.405