Information Sharing in Neonatal Intensive Care: Parental Perceptions and Preferences

Aim: Information sharing is a key component of family-centred care, which has traditionally occurred through patient information leaflets. Although patients' access to health information is rapidly changing with internet and mobile technologies, there are few data on parents' perception and preferences for information sharing. Our aim was to evaluate parents' perception of information sharing in neonatal care, to determine parents' preferred medium for health information and to identify priority content for inclusion in a smartphone application.

Methods: Parents at Kidz First Neonatal Care (KFNC) were eligible to take part in our survey, which comprised five sections: (i) demographics, (ii) information in neonatal care, (iii) printed information in neonatal care, (iv) parental views about development of a neonatal smartphone application and (v) general feedback. Parental satisfaction with information sharing in KFNC was assessed with a modified version of the Empowerment of Parents in the Intensive Care-neonatology questionnaire. Descriptive and summary statistics were calculated, and free text data were analysed by content analysis.

Results: Forty-one surveys were received, with 62% completed by mothers. Parents were supportive of electronic information, with 88% highly scoring the question 'I would download and use a free neonatal care app'. However, parental views on the need to continue printed material if a neonatal care smartphone application was provided were mixed. Of those parents who provided free-text recommendations, priority content included information about neonatal conditions, preparing for discharge and available supports.

Conclusion: Parents had positive perceptions of information sharing in neonatal care and were strongly supportive of the introduction of a neonatal phone application.