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Background There has been an increasing interest in how children and young people can be involved in patient and public involvement and engagement (PPIE) in health research. However, relatively little robust evidence exists about which children and young people are reported as being involved or excluded from PPIE; the methods reported as being used to involve them in PPIE; and the reasons presented for their involvement in PPIE and what happens as a result. We performed a scoping review to identify, synthesise and present what is known from the literature about patient and public involvement and engagement activities with children and young people in health related research. Methods Relevant studies were identified by searches in Scopus, Medline, CINAHL, Cochrane and PsychInfo databases, and hand checking of reference lists and grey literature. An adapted version of the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) was used as a framework to collate the data. Two reviewers independently screened articles and decisions were consensually made. Main findings A total of 9805 references were identified (after duplicates were removed) through the literature search, of which 233 full-text articles were assessed for eligibility. Forty studies published between 2000 and 2019 were included in the review. The review reveals ambiguities in the quality of reporting of PPIE with children with clear reporting on demographics and health conditions. The review found that children and young people were commonly involved in multiple stages of research but there was also significant variation in the level at which children and young people were involved in PPIE. Evaluation of the impact of children and young people’s involvement in PPIE was limited. Conclusions Consultation, engagement and participation can all offer children and young people worthwhile ways of contributing to research with the level, purpose and imp

Losing your child: becoming a hero to zero parent

Children and young people with long-term conditions are not always provided with opportunities to engage fully in consultations. This systematic review examined the effectiveness or worth of methods used to engage children and young people with long-term conditions in their consultations. Searches were undertaken in October 2016 in eight databases and of the grey literature. Two reviewers independently screened the results, extracted data and assessed the quality of the studies using a validated and reliable checklist. A narrative synthesis of mixed method data was undertaken. Twelve studies were included in the review. Interventions used to engage children and young people mainly focused on face-to-face outpatient consultations, with an emphasis on diabetes and asthma. Most of the interventions focused on either improving health professionals’ communication skills or encouraging children’s and young people’s engagement through providing condition-related information or a structured way to be included in consultations. Fewer interventions were child-led or directed towards developing children’s and young people’s skills to become key reporters of their condition. This review has demonstrated that interventions targeted at children and young people with long-term conditions can improve their levels of engagement in consultations. There is a need for more systematic development and robust evaluation of interventions to improve children’s active participation in consultations.

Children and young people with long-term conditions are not always provided with opportunities to engage fully in consultations. This systematic review examined the effectiveness or value of methods used to engage children and young people with long-term conditions in their consultations. Searches were undertaken in October 2016 in eight databases and of the grey literature. Two reviewers independently screened the results, extracted data and assessed the quality of the studies using a validated and reliable checklist. A narrative synthesis of mixed method data was undertaken. Twelve studies were included in the review. Interventions used to engage children and young people mainly focussed on face to face outpatient consultations, with an emphasis on diabetes and asthma. Most interventions focussed on either improving health professionals’ communication skills or encouraging children’s and young peoples’ engagement through providing condition-related information or a structured way to be included in consultations. Fewer interventions were child-led or directed towards developing children’s and young peoples’ skills to become key reporters of their condition. This review has demonstrated that interventions targeted at children and young people with long-term conditions can improve their levels of engagement in consultations. There is a need for more systematic development and robust evaluation of interventions to improve children’s active participation in consultations

Christiansen, A., Barnes, T., ;Bewley, T., Kaehne, A., Lynes, D., Kirkcaldy, A. (2016). An evaluation of the Open and Honest Care Programme in acute NHS trusts in Northern England. Journal of Nursing Management, 24(6), 755-765. Available here.