The engagement of young people in the development and implementation of programmes to secure health : a systematic review

Abstract

Participatory research approaches in which participants actively work with researchers are being increasingly recognized as being means of not only understanding how to better prevent and manage complex health problems but also empowering participants (Horowitz et al., 2009). This is contrast to traditional approaches to health promotion which are led by professionals (Harden and Oliver, 2001). Whilst the majority of programmes which employ participatory approaches have worked with marginalised adult populations (Vaughn et al., 2013), there is increasing recognition that such an approach could be utilised in child and adolescent health promotion (Wong et al., 2010). This may be partly reflective of a change in perspective on children’s status in society more generally, with children and young people now having a say in many aspects of their lives (Alderson and Morrow, 2004). Consequently, there is now a raft of published trials which involve children and young people in the development, implementation and evaluation of interventions aiming to secure health. However, there is a lack syntheses of such studies (Patton et al., 2016). A systematic review which examines the components and effectiveness of these programmes is therefore timely. This project therefore aims to summarise through a systematic review, the evidence base the benefits of the involvement of children and young people in the development, implementation and evaluation of programmes aiming to secure health. This will be addressed through the following research questions: 1. What are the following characteristics of studies which involve young people in the development, implementation and evaluation of programmes aiming to secure health: a.Study design? b.Participants (i.e. age, gender)? c.Setting (i.e. geographical location, demographics, school or community-based)? d.Characteristics of the intervention (i.e. content, health focus, theoretical/empirical basis, training, extent of young people’s and adults’ involvement)? e.Quality of the research on which the evidence rests? 2. What is the evidence of the impact that involving young people has on programme effectiveness through outcome evaluations? 3. What are the views that young people have of being involved in the process of developing health programmes? 4. What are the barriers and facilitators associated with the meaningful, appropriate and effective involvement of young people? The methodology for this review follows the guidance detailed by the Evidence for Policy and Practice Information and Co-ordianting (EPPI) centre (EPPI-Centre, 2010). A search of ten bibliographic databases (e.g. Medline, CINAHL, ASSIA) and the grey literature was conducted. All identified studies were screened by two reviewers and were included if they met a pre-defined inclusion criteria. Data that could be used to answer the research questions was extracted and a narrative synthesis was performed. Risk of bias for the quantitative studies was assessed using the Effective Public Health Practice Project’s quality assessment tool and trustworthiness of the qualitative studies was assessed using the EPPI centre tool. This review identified 42 distinct studies of programmes that involved young people in one or more of: issue identification, needs assessment (i.e. investigating the issue of interest), development of the intervention (including development of materials), delivery of the intervention and evaluation of the intervention. The majority of programmes were conducted in high income countries, although only five were conducted in the WHO Europe region. Programmes were exclusively targeted at adolescents (i.e. 10-19 year olds) and focused on a range of health topics with sexual health being the most common. Of the included studies, the majority conducted outcome evaluations (n=34). These studies reported mixed effects, with the most consistent effects being for tobacco and healthy eating behaviours, and for knowledge of the specific health behaviour of the programme. There was no clear relationship between level of participation and programme effectiveness. Generally, the higher quality studies involved lower levels of participation. Study quality was generally poor there was considerable heterogeneity in study design, study quality, level of participation, health focus and outcome measurement which prohibited meta-analysis. Nevertheless, the qualitative studies suggested that young people appeared to enjoy participating in these programmes and identified a number of benefits (e.g. learning new schools, developing confidence, learning more from the programme, gaining a better understanding of their community). However, a number of barriers to participation were identified (e.g. difficulties performing in front of other students, time pressures, insufficient training, interest waning over time, logistical issues). Conversely, the following facilitators were also reported: positive relationships between young people and staff; staff that are compassionate and not authoritative, local trainers and sufficient training. To conclude, programmes that involve young people in the implementation and development are generally viewed as positive by the young people themselves and may confer some benefits in health related knowledge and some health behaviours (e.g. smoking, healthy eating). However, more high quality studies in which young people are involved in multiple components of participation and also compare the effects between young people actually involved in the implementation and/or delivery are necessary.