Implications

This review fills an existing knowledge gap around the benefits of youth participation in the development, implementation and evaluation of programmes aiming to secure health. Its findings will strengthen the evidence-base to foster the effective inclusion of young people in policy-making, programme development and research that affects them. The UNCRC marked a turning point in public perceptions and the recognition that young people have an ‘insider’ perspective (Kellett, 2005) which means that by engaging with them, we are

working with experts (Vaughn et al., 2013). Other stakeholders have followed suit, for example in the European Union, efforts to coordinate youth involvement in societal matters took a turn in 2001 with the publication of a white paper to set out priority areas for

regional coordination (European Commission, 2001, European Commission, 2004, Jensen et al., 2005). The WHO also issued their own call to arms (Jensen 2005) supporting the

inclusion of youth in programme design and showcasing how stakeholders can enable their effective involvement. Similarly, across different countries including England (Burke, 2010) and Scotland (Stafford and Smith, 2009) government policy is also acknowledging children’s right to self-determination.Since youth participation ‘in health-related advocacy has

increased over the past two decades, fostered at a global level by the UN and other international organisations’ (Lancet 2016), these findings are all the more relevant. All signs point to what Kingdon (2003) called a ‘policy window’ where the problem, proposals, and politics are coming together to foster and enable progress in the area of youth participation. This systematic review is thus extremely timely in that it provides evidence that can be used to answer critical stakeholder questions on the issue of youth engagement. If we assume that the ultimate goal of all the aforementioned international efforts is to enable young people to actively participate in society or research that affects them, then this review draws a pretty striking picture signaling a lack of high-quality

research that can be used to inform policies and programmes aiming to do just that. This is a critical weakness in the evidence that affects research, policy and programme design and its effectiveness in this area. Because although better evidence is necessary for better policy-

making or programme development, it alone is not enough to elicit either since its value or robustness does not automatically make it part of the policy or political argument (National Academies Press 2012).

The evidence in this area suffers from a number of biases (e.g. geographic, setting, age of participants) and was found to mostly be of low quality. Nonetheless, we believe that increased quality can be achieved via better designed studies that involve a broader age range of young people involved in a number of stages of programme development and that consider participants independently (control and intervention groups) and in a wider number of settings (not just school). Additionally, we would encourage better scientific reporting that allows others to replicate. We support the development of reporting standards to improve transparency and research practices, as well as tools, like checklists, that enable the implementation, evaluation and replication of effective programmes. Additionally, while there was no clear association between level of participation and programme effectiveness, this was likely result of the breadth and heterogeneity in the research included, as well as inappropriate outcome indicators that are not sensitive enough. And though this sounds like a methodological excuse, it highlights an important methodological and knowledge gap in the evidence around youth involvement in health programmes.

Wong rightly captures the essence of participation and its relevance to young people: ‘Youth participation has potential to promote individual and community health by satisfying

developmental needs in a positive manner while also enhancing the relevance of research, policy, and practice to lived experiences of children and adolescents.’ (Wong 2010, p 101). Yet, while young people have now an increased right and higher credibility to discuss and engage on matters that are relevant to them, too often the mechanisms through which we could enable such participation rely on tokenistic approaches that diminish the young

people’s ability to properly participate (Lancet 2016). This in turn lowers the bar and enables responsible parties to take any kind of participation over investing in activities or

programmes that truly facilitate young people’s understanding, contribution and role in the participatory process. This review helps to draw an evidence-informed picture of what effective youth engagement looks like in programmes aiming to secure health.

While empowerment is touted throughout the literature identified in this review, we found that every single study involved an adult ‘in some aspects of the programme

conceptualisation and development and only in a small number of studies their role was

limited to facilitating the young people to determine the focus and nature of the

programme (n=6)’. It is critical that stakeholders begin to reflect on the ways in which adults influence processes aimed at involving young people.This review provides evidence that there are real limitations on the range of young people’s involvement in development, implementation and evaluation of programmes. Policy-makers, researchers and programme

staff should encourage and promote programme development that more actively equips young people with the role and capacity to affect the interventions of which they are part. It will be important to give adults incentives to engage in and enable more collaborative processes.

The implications of our findings span from giving readers a typology of effectiveness to laying the groundwork for the development of evidence-informed tools that can support the replication and implementation of programmes that while engaging young people can promote health benefits to this group.