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Table 3 Recommendations for future PPI in PIC context

From: Patient and public involvement in Paediatric Intensive Care research: considerations, challenges and facilitating factors

• Use resources available to researchers concerning PPI and service users, including existing PPI groups where available [26, 16, 17, 3133, 40, 46, 84].  
• Develop a local PIC maintained database of former patients and parents. Consider approaching former patients and parents of children.  
• Consult with clinicians and families to identify children with specific needs or vulnerabilities and discuss ways to ensure inclusivity [39].  
• Follow up potential participants on the ward but consider approach on PIC if it is appropriate for the individual, particularly where multiple admissions are likely.  
• Consider engaging with siblings and other relatives/carers of the child who has been admitted to PIC, but ensure sensitivity with parents as gatekeepers [17].  
• Consider how to engage with bereaved families or families with complex situations. Liaise with family support services to determine appropriateness and timing of approach. If become aware of issues of PTSD ensure that parents/carers are assisted to access services and support [55].  
• Use a variety of methods to advertise for PPI volunteers, with application forms with contact details to collate interested parties, including paper forms, flyers, posters and information on websites.  
• When meetings are face to face ensure the setting and time are convenient and large enough to accommodate all attendees needs [41].  
• Provide PIC naive PPI participants with training about context of PIC and plan visits so they can see the environment directly.  
• Provide research naive participants with training on research methods and concepts [61].  
• Consider PPI within school setting particularly for the perspective of a PIC naïve population [30].  
• Consider approaching charities or specialist support services to find appropriate PPI representatives [71, 72].  
• Utilise a variety of communication methods including social media, texting, Smartphone apps and newsletters [31]. Keep in touch regularly with updates [16].  
• Use a range of different methods of conducting PPI to facilitate participation from a wide group of people such as video conferencing, use of surveys and use of virtual forums [64].  
• Consider a specific request for participants through use of INVOLVE resource (www.peopleinresearch.org/) [32].