Information needs of parents of new babies with cystic fibrisis: A qualitative study

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Presenters: Linda Shields1, Cindy Branch-Smith2, Melanie Jessup3, Tonia Douglas4

Organisation: 1James Cook University, Townsville, Qld, Australia, 2Telethon Kids Institute, University of Western Australia, Perth, WA, Australia, 3Australian Catholic University/Prince Charles Hospital, Brisbane, QLD, Australia, 4Royal Children’s Hospital, Brisbane, QLD, Australia

Date of Presentation: 20/10/2014

Abstract:

AIM:
To create a supportive environment for parents of infants newly diagnosed with cystic fibrosis (CF), by exploring their needs for information, and information seeking behaviours.
METHOD:
Parents of CF children need support. The initial period post-diagnosis is crucial for education and communication that will shape the well-being of children and families. Information, and its delivery, influence parents’ adjustment, and their engagement with the CF team. This paper describes development of a questionnaire to examine information needs of parents of newly diagnosed infants. Qualitative methods (n=10) using thematic analysis, linked with literature, provided themes for the questions, which were tested with a panel of parents and health professionals. We describe the qualitative study.
RESULTS:
Parents cope differently with information given by the multidisciplinary CF team. Much of the information is overwhelming and difficult, ‘too much too soon’; others wanted context. Most sought practical information they could modify/influence, eg, balancing infection control and lifestyle. Participants described information-seeking negatively. Insight into factors affecting engagement provided recommendations for context, content, format and timing of delivery.
CONCLUSION:
Having parents’ insight into information and its delivery, optimal timing and environment for this initial period is indispensable for working with them to plan and moderate relevant, accurate information delivery.