Information to parents in the neonatal unit

Abstract

We aimed to identify the principal components during neonatal care regarding parents' views of the information received, and to analyse the relationships between these variables and parental characteristics. We surveyed a convenience sample of 141 parents with infants in the neonatal intensive care unit, based on the EMPATHIC-N questionnaire. Principal component analysis revealed that parents viewed the information provided as either critical or general. The importance of critical information was not significantly dependent on any demographic variable, but the rating for general information was significantly related to parental educational level and the infant's gestational age. Hence, the results suggest no need to discriminate among parents regarding the way critical information is presented, but parents with a lower educational level and/or a more premature infant should receive more thorough general information. The value of these results is limited by the fact that the questionnaire was not validated for the Swedish context.

Introduction

Parents with premature or sick infants admitted to a neonatal intensive care unit (NICU) have a great need for information. The desire to receive accurate and understandable information is one of the primary needs of parents in the NICU; it may even be their most important need (De Rouck and Leys, 2009, Cleveland, 2008). Parents desire information about their infant and their infant's progress during NICU hospitalization as a way of engaging in the care of their infant and to gain control over the situation. Receiving inaccurate and/or insufficient information pertaining to their premature or sick infant's condition is often a source of stress, and may also hinder parental attachment with the child (Hurst, 2001).

Parents receive different types of information for different purposes during their time in the NICU. Research has shown that regular communication with caregivers, adapted to different needs at different times, helps parents to interact and bond with their premature neonate (Guillaume et al., 2013). For example, Smith et al. (2012) found that the staff can support parents' coping strategies by providing accurate and consistent clinical information. Parents often appreciate getting regular information and being informed by both nurses and physicians (Ignell Modé et al., 2014, Wigert et al., 2013). In particular, parents seem to appreciate information about planned procedures (Edéll-Gustafsson et al., 2015). Some parents prefer to get complicated or technical information from physicians, even though they may need additional information from nurses for more guidance (Smith et al., 2012). On the other hand, information regarding routines and practicalities in the NICU is often made available in brochures (Ignell Modé et al., 2014).

When information is given to parents depends on its seriousness or significance. Cuttini et al. (1999) found that routine information is usually given when time is available, but acute information regarding, for example, substantial deterioration in the child's condition, is typically given immediately or as soon as the health care professionals have a clear picture of the child's condition. It is also important to fine-tune the provision of information with parental readiness; either too little or too much information at an unsuitable moment can induce anxiety and fear (Arockiasamy et al., 2008, Shellabarger and Thompson, 1993).

More specific studies related to the provision of information to parents in the NICU can also be found in the recent literature. For example, the benefits of using smartphone applications to provide parents with information have been evaluated (Garfield et al., 2016). The effects of clinical staffs' communication on parental stress have been explored (Enke et al., 2016). The effect of a course in communication for nurses (Bry et al., 2016) or of an internet-based education program for mothers (Kadivar et al., 2016) on the interaction between professionals and parents has been analysed. The information and communication needs of families in neonatal end-of-life and bereavement in the NICU have been explored (Sadeghi et al., 2016; Xafis et al., 2015). Furthermore, the information needs of fathers in the NICU have been specifically reviewed (Ireland et al., 2016).

The fact that specific pieces of information given to parents in the NICU can be classified in terms of categories as well as in terms of seriousness or significance implies that parents may value different types of information differently (Cuttini et al., 1999). Managing the flow and content of information given to parents might also be problematic because all parents are different. What works well for some parents might not work for others. In particular, parental characteristics, such as gender, age, and previous parental experience, should be considered in this context (De Rouck and Leys, 2009; Lantz, 2013a, Wigert et al., 2014, Ireland et al., 2016). However, there are essentially no prior quantitative studies with generalizable results in this particular area. Therefore, the purpose of this study was to identify the principal components of neonatal care with respect to the parental view of the information provided to them, and to analyse the relation between these principal components and parental characteristics.