‘A group of totally awesome people who do stuff’ - a qualitative descriptive study of a children and young people’s patient and public involvement endeavour

Abstract

Background: In 2013, the Cambridge Clinical Research Facility (CCRF) set up a Children’s Non-Executive Research Board to advise on service and facility development and research involving children and young people (CYP). In 2015, the Children’s Experiences of Engaging in Research study (CHEER) was conceived to explore the Children’s Board as a patient and public involvement initiative. Aim: To explore the views of CYP, staff and parents involved in the Children’s Board with the view to describe their experiences of the selected mechanism of involvement (Children’s Board) within the context of operation (CCRF). Methods: A qualitative descriptive methodology involving qualitative content analysis of semi-structured interviews was used to derive descriptive summaries of the interview data. Setting and participants: Interviews were carried out with staff (n = 5), children (n = 2) and parents (n = 2) who participated in the first or second Children’s Board meetings. Results: Twelve descriptive summaries emerged: (1) CCRF ‘role’ perspective (2) purpose, remit and future direction (3) aspirations (4) learning as reciprocation (5) regular meetings, contact and feedback (6) expectation setting and ground rules (7) culture of PPI (8) surprise, underestimation and self-selection (9) reciprocity, incentivisation and participation (10) practicalities, timing and barriers (11) parental roles (12) event structure. These highlighted the importance of selecting the right mechanism of involvement in relation to context for involvement and the reductive biases adults and healthcare providers may unconsciously hold. Both of these aspects may affect the efficacy of PPI endeavours with CYP. Discussion and conclusions: Mechanisms by which CYP are involved in research should be considered from the outset; taking into consideration both the setting and contextual features. Contextual and process factors important in the adult PPI realm were generally observed in this PPI initiative with CYP; however further research is required to explore unconscious biases and reductive perceptions in adult facilitators.