{
  "abstract": "Aim Involving patients and the public in the development of research studies is an integral part of the National Institute for Health Research’s strategy. 1 This includes the design and delivery of studies. Recognising the benefits of engaging early with parents, we wanted to further expand this so that parents lived experiences informed the design and delivery of a new feasibility study. We aimed to recruit a diverse group of 10–15 parents who administered medicines to their baby following discharge from a neonatal unit within the last five years.Method The research team developed a Parent Advisory Group (PAG) outline including study aims, expectations of the group and meeting format. This engaged the expertise of research pharmacists, a research nurse, an academic, senior member of Bliss charity leadership and an expert parent. Inclusion criteria for the PAG required parents of babies discharged from neonatal units in the last five years who were prescribed medication. Bliss and SPOONs (a neonatal family support group) shared an advert via their social media. Interested parents completed a Microsoft Form to provide contact details and register initial interest. They then completed demographic information about themselves and their baby. Based on their preferences, they received study information and were invited to an informal Microsoft Teams meeting or phone call with the research team. Those interested after the meeting received a PAG handbook with further information about the group, patient information sheet, and consent form. Verbal consent was obtained via telephone at a time convenient to them. Local research ‘parent champions’ were engaged to explore ways to reach more diverse groups.Results 51 parents responded to the initial expression of interest and were sent the Microsoft form to check eligibility. Introductory meetings were held with 12 parents, and 11 were subsequently recruited to the PAG. The group demonstrates diversity in neonatal experiences, including variation in singleton or multiple pregnancies, gestational age, number and types of medicines administered and duration of hospital stay. However, there is limited diversity in terms of gender, ethnicity and cultural background: 10 mothers and 1 father. One parent identifies English as a second language. To date we have held 3 online and 1 face-to-face meeting. Despite the lack of diversity, the PAG has provided invaluable insight into the study.Local parent champions from different cultures provided very useful feedback on why parents may be reluctant to participate in the PAG, suggesting gaining more informal feedback at community coffee mornings.To reduce drop-out, the number of steps in the PAG recruitment process was reduced. This was successful in improving recruitment rate.Conclusion The PAG has already contributed meaningfully to the feasibility study by advising on data collection, parent engagement, and timing of contact with parents in neonatal units.Amending the recruitment process to reduce the steps involved and prioritising flexible, parent-led communication has helped improve engagement. Despite this, reaching more culturally and gender-diverse groups remains a challenge. Future recruitment efforts may benefit from targeted outreach to underrepresented communities.Reference National Institute for Health and Care Research Policy Research Unit Behavioural and Social Sciences. Patient and Public Involvement and Engagement Strategy [Internet]. Newcastle: National Institute for Health and Care Research Policy Research Unit Behavioural and Social Sciences: 2024. Available from: https ://behscipru.nihr.ac.uk/for-the-public/patient-and-public-involvement-strategy/(Accessed 4 July 2025).",
  "authors": [
    {
      "affiliations": [
        "Alder Hey Children’s NHS Foundation Trust, UK"
      ],
      "name": "Cara Sutton"
    },
    {
      "affiliations": [
        "Alder Hey Children’s NHS Foundation Trust, UK"
      ],
      "name": "Louise Bracken"
    },
    {
      "affiliations": [
        "Alder Hey Children’s NHS Foundation Trust, UK"
      ],
      "name": "Andrea Gill"
    },
    {
      "affiliations": [
        "Alder Hey Children’s NHS Foundation Trust, UK"
      ],
      "name": "Janet Clark"
    },
    {
      "affiliations": [
        "PADDINGToN-2 Study Parent Representative, UK"
      ],
      "name": "Rachel Corry"
    },
    {
      "affiliations": [
        "Bliss Charity, UK"
      ],
      "name": "Peter Bradley"
    },
    {
      "affiliations": [
        "Edge Hill University, UK"
      ],
      "name": "Bernie Carter"
    }
  ],
  "title": "SP6 Recruiting a diverse parent advisory group for a neonatal feasibility study",
  "uid": "85b270e0-d598-5791-a081-96c5ef1991f2"
}