A qualitative study examining parental experiences and aspirations regarding participation in decision-making in two neonatal intensive care units

• Main Author: Fairhurst, Natalie A.
• Published: University of Salford 2018
• Online Access: https://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.766348

<em>Background:</em> Parents of babies hospitalised in neonatal intensive care units in the United Kingdom are faced with multiple decisions regarding their baby's care throughout their neonatal journey. There are disparities in care across the 23 neonatal networks in the UK, with parental participation in decision-making being an area in which significant improvements in practice could be made. <em>Aim:</em> To establish parents' experiences of participating in clinical decision-making whilst eliciting the aspirations of parents to participate in clinical decision-making. <em>Objectives:</em> The objectives of this study were to: <ul> <li>Establish parental understanding about their baby's admission to NICU</li> <li>Identify parents' perceptions of their level of involvement in decision-making about their baby's management</li> <li>Decipher if parents felt listened to by healthcare professionals</li> <li>Determine how comfortable parents were with questioning and challenging the care provided to their babies</li> <li>Ascertain how parents felt about decisions that they had made, if any</li> <li>Identify learning for professionals to improve care further.</li> </ul> <em>Design and Sample:</em> A qualitative study was undertaken to gain insight into parental needs in two neonatal intensive care units. This study was informed by an organised consultation with a local parent support group to discuss parental experiences. This, combined with knowledge of health professionals, guided the development of a survey. This self-completed cross-sectional survey was administered to eligible parents 1-3 weeks after admission (n=21). It was structured on a five-point Likert scale with additional free-text spaces for comments. The results from the survey informed individual focussed interviews with a sub-group of the survey sample (n=5). This qualitative component was designed to enhance the survey findings through exploration of parents' personal experiences and reflections on the outcomes of the survey. A single group interview was conducted with five parents attending the local parent support group after expressing interest in sharing their experiences. <em>Data Analysis:</em> Survey data was analysed using descriptive statistics. Survey comments were then analysed using thematic analysis. Interview data was subjected to framework analysis, with the initial frame set by survey findings. <em>Outcomes:</em> This was the first study in the world to study the whole of decision-making in NICU whether parental participation was allowed or not. Staff-parent communication and relationship-building require considerable attention first before the issue of participation in decision-making can be addressed effectively. The use of transactional analysis as a means of understanding the dynamics and potential for change in relationships in NICU was a further novel aspect to the study. The application of Van Manen's explanation of categories of decisions led to a new way of understanding and decoding parental acceptance of exclusion from decision-making.