Table 1 Description of PPI stages complete, ongoing and planned
Stage | Description | Demographic characteristics |
|---|---|---|
1. Informal PPI (complete) | Informal discussions with families over ten years of neonatal practice; personal experiences with expressing breastmilk and breastfeeding support communities; published qualitative literature and partnership prioritisation exercises | Varied family characteristics. Four of the authors involved at this stage had experiences related to expressing milk. |
2. Online Questionnaire (complete) | Online questionnaire with free text questions and prioritisation exercises. Advertised via Bliss (national charity for sick and preterm infants) | 675 contributors. 71% experienced birth before 32 weeks of pregnancy. 95% white ethnicity |
3. Charity Collaborator (complete) | Bliss staff members involved in creation of funding application and RCT protocol | Two staff members |
4. Online Panels (complete) | Two evening online panels. Contributors sent documents to review in advance. Discussion of trial design and documents encouraged. Role description provided in advance and payment offered as per INVOLVE guidance [27] | Six contributors. Two from Black and other minority ethnic groups. One was under 25 years old |
5. RCT Intervention Modification Exercise (complete) | Contributors sent two draft intervention recordings. Focused questionnaires with feedback and recommendations. Role description provided in advance and payment offered as per INVOLVE guidance | 12 contributors. Four from Black and other minority ethnic groups. Two contributors with English as a second language. One was under 25 years old |
6. RCT Steering Committee (ongoing) | PPI contributors on the Trial Steering Committee attend meetings and are consulted when difficulties occur. Role description provided in advance and payment offered as per INVOLVE guidance. | One parent and one Bliss staff member |
7. Dissemination Panel (planned) | A PPI dissemination panel will be formed to discuss strategy and create resources. Best Beginnings (a national charity) will co-create printed resources for neonatal units | Study participants who consented for further contact will be invited |