Our overall aim with this scoping review was to grade children and young people’s participation in the development of interventions. To enable this goal and to gain an overall view of the field we needed to make sense of our complex findings. Therefore, in addition to displaying the number of articles, we also found it useful to map the research fields according to general characteristics of the included articles such as the settings and countries were the research took place. It was also considered of interest to focus on the interventions made and the methodological characteristics of the included articles, i.e. the actions agreed as the result of the research and the types of practices that were needed to promote children and young people to participate in the research field. Furthermore, we used Shier’s [21] model to analyse and grade our findings according to the children and young people’s level of committed participation in the research. To allow this view of the field to be seen, the findings are illustrated in three areas; general characteristics of the included articles, methodological characteristics of the included articles and children and young people’s level of participation in the development of interventions in the included articles, with a combination of texts, tables, and figures.
General characteristics of the included articles
There was a total of 41 articles included in this scoping review. These were published between 2000 and 2017 and were from different parts of the world. A majority of the studies, 21, were conducted in North and Central America [25,26,27,28,29,30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45] and 15 in Europe [46,47,48,49,50,51,52,53,54,55,56,57,58,59,60]. A small minority of the studies were thus undertaken in the other continents, Asia [61,62,63], Africa [64] and Australia [65]. The participants in the included articles varied in age between 3 and 25. Four of the included studies did not, however, explicitly declare the participants’ age and instead used terms such as teenager or teens [44, 53], adolescents [41] and students [36]. Another way of expressing the participants’ “age” was to refer to which grade or school system the participants were in when the research took place [33, 45].
Furthermore, the included articles in this scoping review varied according to research settings. We categorised three broad settings, 13 were conducted in community settings [26, 29,30,31,32, 35, 37, 38, 41, 43, 44, 61, 65], a further 11 in healthcare settings [25, 28, 42, 46, 49, 52, 53, 55, 57,58,59], and 17 in school settings [27, 33, 34, 36, 39, 40, 45, 47, 48, 50, 51, 54, 56, 60, 62,63,64].
The reviewed articles had two different foci for the developed interventions, support for lifestyle changes and support in managing illness and disease (Fig. 2). However, both of these foci were supporting interventions concerning health and well-being. The main areas in 30 articles were supportive lifestyle interventions and concerned: a healthy diet and obesity [27, 36, 39, 41, 47, 54, 56, 60], physical activity [26, 36, 38, 39, 41, 45, 48, 54], substance abuse such as, alcohol, tobacco and drug use [29, 34, 40, 43, 44, 51, 61, 62, 65], sexual and reproductive health [29, 31, 42, 43, 50, 64], violence [29, 37], stress [33], social skills [63], health beliefs [30] and mental health promotion [35]. In addition to lifestyle issues, eleven of the articles considered issues that supported children and young people with their illness or disease. These were supportive interventions to manage healthcare situations [58], support children and young people with cancer [25, 46, 57, 59], diabetes [28, 52, 53], mental illness [32, 49], and asthma [52, 55].
Methodological characteristics of the included articles
Most of the studies included in the scoping review have used interviews as a data collection method to give a voice to the participants. Focus group interviews was the most common data collection method [26, 27, 29,30,31,32,33,34, 37, 39, 41, 44, 45, 47,48,49,50,51,52,53,54,55,56, 59,60,61,62,63,64] while other studies have used individual interviews [25, 28, 30, 34, 36, 42, 46, 48, 49, 57, 58, 64] with children and young people. However, seven of the studies reported including both interviews and surveys to involve the children and young people’s views in the development of the intervention [27, 30, 42, 44, 45, 48, 65]. As a supplement to these more traditional data collection methods there were also research designs that included a range of innovative methods, such as video recordings [40, 49, 57] photographs [38, 40, 54] drawings and texts [46, 58, 59] advisory boards [33], e-mail and a social networking site [55], observations [57, 64], script-making [40, 43], storyboarding [63], active and spontaneous role play [43], and videoconferences and in-person meetings [35].
The interventions were sometimes tested for feasibility and usability and a wide range of methods were used, including face validity [25] think-aloud methods [43, 46, 47, 57], interviews [31, 32, 34, 65] and observations [33, 57]. Written feedback [27, 31, 34, 54], workshops [52, 59, 65] and a mobile survey [65] were also used.
Children and young people’s level of participation in the development of interventions
The articles were also graded according to the children and young people’s level of participation in the development of the interventions. We used Shier’s model, which contains five levels of participation [21], as a framework to map our findings (Fig. 3).
All studies regardless of design were graded from level one to level five. However, due to the inclusion criteria in this scoping review, where children and young people had to be involved in the development of an intervention, all the included articles met the criteria for the second level according to Shier’s model [21]. Level one is thus not further described in the findings section. There was, however, a variation in how clearly and detailed the authors described the research process as to how the voice of the children and young people influenced the development of the interventions.
The findings showed a variation in the articles in terms of the children and young people’s level of participation. Furthermore, this participation varied both in quantitative and qualitative terms from just being an active informant to an active agent taking part in more steps in the research process as a co- researcher. When the research process was shaped by views of a higher level of mutuality the participants were enabled to share power and responsibility in the research process.
Level 2. Children and young people are supported to express their views in the development of interventions
This was the lowest level for participation found in this scoping review. The children and young people simply had a participatory role as informants in the research process at this level. Only three articles [50, 51, 60] in this scoping review were analysed as only meeting the criteria for level two. The low rating for these articles was due to the researchers only describing that they had supported the children and young people to express their views and that they had facilitated ways for listening to the participants. The researchers did not, however, describe how the information was used. Furthermore, these articles only stated that the performed focus groups were to inform the development of an intervention but the researchers did not explicitly describe the ways in which the information affects the intervention [50, 51, 60]. It is unclear if the participants’ voices were taken into account or not thus leaving the reader with unanswered questions.
Level 3. Children and young people’s views are taken into account in the development of interventions
The vast majority, in total 28, of the included scoping-review articles, met the criteria for level 3 [25,26,27,28,29, 32,33,34, 36,37,38,39,40,41, 43,44,45, 47,48,49, 53,54,55,56, 61, 62, 64, 65]. The distinction between this third level and the previous one was that the children and young people’s views were not only asked for and listened to, but their voice was also seriously taken into account with the aim of influencing the further process of the development of the intervention, and that this was explicitly expressed in the article.
Expressions such as; “helped to develop the intervention”, “guided” or “informed” were used to describe the ways in which the children and young people’s views were taken into account at this level. We can therefore conclude that the children and young people were listened to and that they also had an impact on the development of the intervention. However, the words that explain the participatory part of the development are relatively vague leaving the reader uncertain as to how much of the information was used by the researchers.
Level 4. Children and young people are involved in the decision-making processes in the development of interventions
Seven of the 41 articles in this scoping review were considered to fulfil the criteria for the fourth level of participation [30, 35, 42, 46, 57, 58, 63]. To be able to attain this assessment the article had to explicitly describe that the researchers involved the participants in the decision-making process when the intervention was developed. This implies that the children and young people’s voice has an even greater level of importance and is taken into consideration. It is not sufficient for this level of participation that the researchers themselves choose which part of the information is to be used in the development. The children and young people’s voices need to instead be taken more seriously and there needs to be a successive transition, from just seeing the children and young people as consultants to a position where they have a much more important and extended position in the development of the intervention. In the articles at this level, the researchers explicitly expressed that the participants; “developed the design”, “determined the development” or “accounted and contributed to the design” as well as being “central collaborators” and “co-designers”.
Level 5. Children and young people share power and responsibility in the development of interventions
Only three of the included articles managed to reach the highest level in Shier’s model of participation [31, 52, 59]. Level 4, children and young people are involved in decision-making processes, and level 5, where children and young people share power and responsibility in decision-making are characterised by a successive transition from children and young people as consultants to a stage where they obtain a position of power. These are also characterised by the willingness of researchers to share or give up their power in favour of the children and young people’s contribution. In moving up the levels (1–5) the model describes the child or young person moving from a passive informant to an active agent towards a partnership position where researchers and children hold an equal position.
The three studies that achieved this level were more characterised by a willingness from the researchers to share the power to influence the developing process with the participants. The research idea in the study by Garafolo et al. [31] originated from the participants themselves. Young transgender women created the intervention with assistance of the research team. The feasibility of the intervention in this study was then tested and evaluated with the participants and their further suggestions were used to refine the intervention. The researchers and the participants in the study by Kime et al. [52], worked “side by side” at different stages of the research process. Finally, in the study by Wärnestål et al. [59], the researchers explicitly named the participants as “designers” and “innovators” and described the co-creation in developing the intervention during the whole process together with the children. This demonstrated that the children and young people had an extended role where they could influence the development. The designation as a designer also proved that the researchers were willing to share a certain amount of power over the developmental process. In addition, the participants were included in several of the research steps as informers, testers, evaluators and finally as informants about the usability of the intervention.