Learning from parental experience in a neonatal surgical unit: a qualitative service evaluation.

Objectives: Patient experience is directly related to health outcomes, and parental experience can be used as a proxy for this in neonatal care. This project was designed to assess parental experience of neonatal surgical care to inform future service developments and improve the care we provide. Methods: This was a qualitative study using rapid qualitative analysis. The study was carried out in a large neonatal surgical intensive care unit in the UK. Parents of infants treated by the neonatal surgical team between March 2020 and February 2021, during the COVID-19 pandemic were included. Purposive sampling was used to ensure that a representative range of parents were interviewed. A semistructured interview was created and tested in a previous phase of work. This questionnaire was used to ask parents open questions about different aspects of their infants' healthcare journey from the antenatal phase through to discharge from the neonatal unit (NUU). Results: Rapid qualitative analysis was employed, and parental experiences were grouped into five main categories: before admission to the NNU, initial admission to NNU, information and support, COVID-19 and discharge. Within these five groups, we highlighted positive experiences to be fed back to the healthcare teams to reinforce good practice, areas that warranted improvement and suggestions for service development. Conclusions: The wealth of data generated from the interviews has been summarized and shared with healthcare teams who are putting the service improvement suggestions into practice. The tool is available for services that wish to measure parental experience.

Developing a method to capture parental experience in a neonatal surgical centre in the context of COVID-19: a qualitative study.

INTRODUCTION: Improved parental experience is related to improved mental and physical health outcomes for the infant. The COVID-19 pandemic abruptly impacted on healthcare delivery and services need information to shape how to manage the disruption and recovery. METHODS: Our aim was to develop a systematic process to capture parents' experience of their neonatal surgical healthcare journey during the pandemic. We identified relevant stakeholders and using semistructured interviews, we explored three key themes.(1) How to recruit and collect data from representative parents?(2) What questions should be asked?(3) How to disseminate results for service development? RESULTS: Responses indicated the need to involve 'difficult to access groups' (eg, first language not English, high social deprivation, low health literacy), defined the range of family and patient characteristics variables to be considered for representative responses (eg, antenatal diagnosis, disease complexity, number of siblings, single parent, parental health). The proposed questions were grouped into five main topics: information preadmission; in-patient experience; support during admission; the effect of COVID-19; discharge and posthospital experience. Recommendations for dissemination included local, regional and national fora as well as the need to feedback to participants about the changes made.Based on the analysis, we developed a semistructured interview which underwent cognitive testing, prepilot and pilot phase testing. DISCUSSION: This protocol is grounded in the views of relevant stakeholders to ensure it captures relevant information in a pragmatic but methodologically sound way. It will next be used to assess parental experience in a large neonatal surgical unit. We hope that the protocol could be adapted and used by other groups.