Aims To evaluate the active involvement of parents of babies in the neonatal intensive care unit (NICU) across 5 domains: “Contact”, “Access and Private Time”, “Feeding and Caring”, “Informed and Involved” and “Recognised as a Parent”; based on the guidelines Toolkit for high quality neonatal services (NHS department of health) 2009, NICE Specialist Neonatal Care Quality Standard 2010, and BLISS Baby Charter 2011. To gather suggestions for improvement in these areas.
Methods A questionnaire based on the 5 domains above was distributed to parents in the NICU over a period of approximately 3 months. The study was advertised by posters in the parents lounge and locker areas, and questionnaires left and collected at the NICU desk. Parents were also opportunistically handed questionnaires or completed them with interviewer where possible. Both quantitative and qualitative data were collected from 23 (sets of) responders.
Results 95.7% of parents reported maximum appropriate physical contact with their baby. 100% reported unlimited access, but many felt constrained by practical issues such as travelling time and cost. 90% reported receiving “enough” or “a lot” of support to express milk. 100% reported receiving “enough” or “a lot” of support to care for their own baby. 100% felt they were treated as parents. 45.5% knew when ward rounds took place. 91% reported that they knew “most” or “everything” of what was going on with their baby. 72.7% reported that updates were “mostly” or “always” received in good time. 23.7% stated that they did not receive enough written information. Recommendations included a summary of the baby’s condition and progress, and more information on his/her specific medical problems. 31.8% reported feeling “not very” or “not involved at all” in decisions about their baby’s care, but only 8.7% stated that they wanted to be more involved.
Conclusions Feedback was mainly positive, with parents reporting they felt supported in most areas and that their needs were recognised by staff. Parents were found to be providing all feasible care to their baby with very few exceptions. The main issues for parents identified by this evaluation were practical; additionally some parents desired more information.