Aim The aim of this project is to work with healthcare professionals (HCPs) and parents/carers to co-design resources aimed at improving medication safety and reducing parental anxiety for those giving medications to neonates at home.

Method Healthcare Professionals (HCPs) in national and international sites and parent/caregiver networks were identified using a stakeholder map. An electronic-survey (e-survey) was developed by a multi-disciplinary study management group including HCPs and expert parents. This was circulated to HCPs involved in the care of neonates and parents/carers whose babies had recently been discharged from hospital. A small number of participants from five hospital sites will be invited to take part in focus groups. Current medication issues will be identified, and resources will be co-designed with parents/carers to support caregivers with medicines administration.

Results To date 27 parents/carers have responded to the e-survey. 70% of the parent/carer group reported having ‘very little’ or ‘no experience’ giving medicines prior to their hospital stay. 48% reported administering between four and six medicines at home. Parents/carers were asked a question about how confident they felt administering medicines at home; on a scale of 1 to 5 with 5 being ‘very confident’ and 1 being not ‘confident at all’. The average level of confidence reported was 3.6; with 20% selecting ‘not confident at all’. 44% received information about their baby’s medicines from the hospital prior to discharge. This information was most frequently given face to face individually with written information being the second most common method. 48% or parents/carers reported finding some resources themselves. Parents/carers were asked about challenges they experienced, and responses included: supply issues, running out of medication or syringes, difficult to find the time to administer, forgetting to take medicines out, storage issues and reluctance to leave house. They were also asked about the timing of the information given and when was most appropriate with ‘throughout the hospital stay’ being the most popular (49%).

To date 38 HCPs have responded to the e-survey, 81% were from Pharmacists. Nurses and Advanced Neonatal Nurse Practitioners accounting for the remainder, there were no responses from doctors at present. 58% of HCPs stated that resources or information to support parents/carers were used at their hospital. The most popular method being face to face information given individually and written information. 66% reported using the resources prior to discharge and 24% throughout the inpatient stay. 86% thought the resources were helpful. 64% felt they could be improved. When HCPs were asked about the problems the most common response being supply of medicines or administration difficulties. 79% reported that parents/carers at their hospital were given the opportunity to administer medicines whilst their baby was an inpatient.

Conclusion Preliminary results show there is room for improvement with the information and support provided to parents/carers. The timing that the information is provided is key with ‘throughout the hospital stay’ being the most popular parent/carer response however, only 24% of HCPs reported information being given throughout the hospital stay. Both groups identified some of the same challenges.