Children and young people's contributions to public involvement and engagement activities in health-related research: A scoping review.

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 impact of involvement determined by the children and young people themselves. However, careful decisions need to be made to ensure that it is suited to the context, setting and focus so that the desired PPIE impacts are achieved. Improvements should be made to the evaluation and reporting of PPIE in research. This will help researchers and funders to better understand the benefits, challenges and impact of PPIE with children and young people on health research.

A systematic evidence synthesis of interventions to engage children and young people in consultations about their long-term conditions.

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.

An evaluation of the Open and Honest Care Programme in acute NHS trusts in Northern England.

AIM: To explore the impact of the National Health Service England's Open and Honest Care Programme on patient safety, patient and staff experience and improvement practices within acute National Health Service settings. BACKGROUND: The Open and Honest Care Programme forms a key tenet of the Nursing Midwifery and Care Staff Strategy launched by the Department of Health in England and Wales in 2012. METHODS: An electronic survey (n = 387) was administered to National Health Service staff. Semi-structured telephone interviews (n = 13) were conducted with senior nurses and ward managers. RESULTS: Over 70% of the survey respondents agreed that the programme increased transparency with the public about the quality of care, helped the working experience of National Health Service staff and improved patient safety respectively. Interviews revealed the Open and Honest Care Programme had enabled National Health Service staff to appraise the effectiveness of their improvement efforts. CONCLUSION: The Open and Honest Care Programme could be an important part of the National Health Service Improvement Strategy. The collection of metric and narrative information highlighted where patient-centred improvements were required, facilitating the targeting and development of specific interventions or resources. IMPLICATIONS FOR NURSING MANAGEMENT: The results indicate that the programme may assist managers to identify areas for improvement and that programmes such as this deserve consideration by health-care management globally.

Preparation for non medical prescribing: a review.

The National Service Framework (England) standards related to medicines for children and young people promote the use of non medical prescribing to improve children's access to appropriate medicines. A project was carried out to evaluate non medical prescribing by paediatric nurses across Merseyside, Manchester and Cheshire in the north west of England. Several qualitative and quantitative data collection methods were used including facilitated workshops, a questionnaire survey of the current independent/supplementary paediatric nurse prescribers and a scoping exercise of four higher education institutions. A major finding was the need for improved preparation of children's nurses in all aspects of medicines management, particularly practical drug administration at pre-registration level and knowledge of pharmacology, pharmacokinetics and pharmacodynamics. If services are to be delivered in line with best practice guidance there needs to be a comprehensive, standardised medicines management education plan that is initiated in pre-registration nurse training, leading to appropriate education for non-medical prescribing roles.