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Table 1 Characteristics of the articles included in the scoping review, based on level of participation

From: Children and young people’s participation in developing interventions in health and well-being: a scoping review

Reference

Country

Setting

Aim

Participants

Intervention

Participating in

Level of Participation (Shier, 2001)

N

Age (years)

Sex

Kind of participant

   

Female

Male

Goold et al., 2006 [50]

UK

School

To develop an intervention for use in sexual health promotion.

16

13–14

12

4

Students

An Interactive Multimedia Learning Environment for sexual health interventions

Focus group interviews

Level 2

The participants were informants

Hawkins et al., 2016 [51]

UK

School

To identify the key components, feasibility and acceptability of a Group Motivational Interviewing (GMI) intervention for promoting health behaviours in schools with focus on alcohol consumption

12*

* In additional 8 teatchers participated

12–14

N/S

N/S

Students in secondary school

A health promotion interventions focus on alcohol consumption Group Motivational Interviewing intervention (GMI)

Focus group interviews

Level 2

The participants were informants

Wind et al., 2005 [60]

Belgium and Netherlands

School

To identify personal beliefs and motivations as well as possible environmental factors that are related to schoolchildren’s fruit and vegetable intake

92

10–12

47

45

Schoolchildren in primary school

A Pro Children intervention

Focus group interviews

Level 2

The participants were informants

Akard et al., 2013 [25]

USA

Healthcare

To develop a legacy-making intervention for children with cancer

Part I: 8

Part II: 1

7–12

N/S

N/S

N/S

N/S

N/S

Patients with cancer

A legacy intervention/memory making for parents and their children with cancer

Part I: Individual interviews

Part II: Individual interview

Level 3

The participants were informants

Arora et al., 2013 [61]

India

Community

To inform the development and test the appropriateness of project ACTIVITY’s intervention model

148*

*In addition 46 adults participated

10–19

yes

yes

Young people living in slums and resettled colonies.

A project to Advance Cessation of Tobacco in Vulnerable Indian Tobacco Consuming Youth (ACTIVITY)

Focus group interviews

Level 3

The participants were informants

Beaulac et al., 2009 [26]

Canada

Community

To develop a better understanding of barriers and facilitators to adolescent participation in physical activity and to identify preferences and concerns regarding the characteristics of a new physical activity programme

17*

*In addition 13 mothers participated

11–14

10

7

Young people from multicultural neighbourhoods

An intervention in physical activity programme with hip hop dance

Focus group interviews

Level 3

The participants were informants

Beaulieu et al., 2012 [27]

Canada

School

To identify the determinants of students staying for lunch at a high school to develop interventions promoting the targeted behaviour.

Part I & II: 153

12–17

yes

yes

High school students

An intervention programme to encourage high school students to stay in school for lunch.

Part I: Survey

Part II: Focus group interviews

Level 3

The participants were informants

Biltoft-Jensen et la., 2014 [47]

Denmark

School

To describe the development and formative evaluation of web-based Dietary Assessment Software for Children (WebDASC).

Part I: 20

Part II: 5

Part III: 70

8–11

8

8–11

N/S

N/S

N/S

N/S

N/S

N/S

Children with different gender, ethnicity and background

An intervention programme with a self-administrated dietary assessment (WebDASC)

Part I: Focus group interviews

Part II: A pilot test with the think-aloud method

Part III: Usability tests of a prototype

Level 3

The participants were informants

Cafazzoet al., 2012 [28]

Canada

Healthcare

To design, develop, and pilot a mHealth intervention for the management of type 1 diabetes in adolescents

Part I: 6*

Part II: 20

*In addition parents and clinical team participated

12–16

N/S

10

N/S

10

Patients with type 1 diabetes

A home and community- based diabetes tele management system (mHealth diabetes app)

Part I: Individual interviews

Part II: Clinical pilot test of the intervention

Level 3

The participants were informants

Caldwell et al., 2004 [29]

USA

Community

To develop a conceptual model to inform intervention development and implementation to strengthen nonresident African American father and son relationships

Part I, II N/S*

*In total 77 African American sons, fathers and mothers participated

8–12

0

yes

African American boys

A family-centred, culturally relevant and gender specific intervention to strengthen relationships between fathers and sons in order to reduce substance use and violent behaviour and to prevent early sexual invitations

Part I: Focus group interviews

Part II: Focus group interviews to refine the intervention

Level 3

The participants were informants

Corder et al., 2015 [48]

UK

School

To develop a physical activity promotion intervention for adolescents

Part I 480

Part II 31

13–14

16–18

yes

11

yes

20

Students

An intervention to increase physical activity among adolescents (GoActive intervention)

Part I Survey

Part II Focus groups interviews and individual interviews

Level 3

The participants were informants

Elf et al., 2012 [49]

Sweden

Healthcare

To reveal young carers’ views of design of a web-based support system (WBSS)

Part I: 12

Part II: 8

16–25

17–25

8

4

4

4

Young carers supporting someone with mental illness

A web-based support system (a web-site)

Part I: Individual interviews or a focus group

Part II: Video recording, design meetings

Level 3

The participants were informants

Goodkind et al., 2012 [32]

Mexico

Community

To create and pilot test a prevention/healing intervention model for American Indian youth and their families

18

7–17

14

4

American Indian youths

Our Life Intervention: An intervention to promote mental health of American Indian Youth

Focus group interviews

Level 3

The participants were informants

Grant et al., 2014 [33]

USA

School

To develop a new intervention for low-income urban youth at risk of negative academic outcomes

Part I, II, III: N/S*

*In addition parents, school staff, community leaders participated

N/S

N/S

N/S

Students in 8th grade

Cities Mentor Project: An intervention to improve academic outcomes for low-income urban youth

Part I: Focus group interviews

Part II: Community advisory board meetings

Part III: Observations of feasibility of the intervention

Level 3

The participants were informants

Greene et al., 2016 [34]

USA

School

To readjust an alcohol-targeted high school media literacy intervention by feasibility test of two versions of the YMD

Part I: 148

Part II: 20

Part III: 13

14–16

104

8

6

44

12

7

Students

An intervention targets high school student alcohol use by the Youth Message development (YMD) curriculum

Part I: Pilot testing of two versions

Part II: Individual interviews

Part III: Focus group interviews

Level 3

The participants were informants

Kong et al., 2012 [36]

Mexico

School

To design a school-based obesity prevention programme

7*

* In additional 8 parents participated

N/S

N/S

N/S

High school students with overweight

A school-based intervention for high schools to promote healthy eating and physical activity

Individual interviews

Level 3

The participants were informants

Lowes et al., 2011 [53]

UK

Healthcare

To describe the active involvement of stakeholders in the development of a research intervention

Part I, II: N/S*

* In total 28 teenagers, parents, adult patients, and professionals participated

N/S

N/S

N/S

Teenagers with diabetes type 1

A Psycho-social Intervention in Children and Teenagers Experiencing Diabetes (DEPICTED)

Part I: Focus group interviews

Part II: Experimental consultations to evaluate and refine the intervention

Level 3

The participants were informants

Lutenbacher et al., 2002 [37]

USA

Community

To identify practical components of decision-making for a youth violence prevention programme planning and to identify differences in decision-making across various provider sectors of the community

10*

*In additional 73 adult people participated

14–18

7

3

Youths

A Youth violence preventive programme

Focus group interviews

Level 3

The participants were informants

Maynard et al., 2009 [54]

UK

School

To assess the feasibility, efficacy and cultural acceptability of child- and family-based interventions to reduce risk factors for childhood and adolescent obesity among ethnic minorities

Part I: 70*

Part II, III: N/S*

* In addition 43 parents, 12 other adults participated

8–13

N/S

N/S

N/S

N/S

Pupils with different ethnicity

The DEAL, Diet and Activity Living

Part I: Focus group interviews

Part II: Photographs of the intervention piloting

Part III: Focus group interviews and written evaluations

Level 3

The participants were informants

Milnes et al., 2013 [55]

UK

Healthcare

To develop an evidence-based pre-consultation guide for young people to use prior to an asthma review with a practice nurse.

Part I: 6

Part II: 8

16–18

13–18

6

5

0

3

Young people with asthma

A pre consulting guide to promote communication in consultations

Part I: Expert panel discussions via e-mail and social networking site

Part II: Focus groups interviews

Level 3

The participants were informants

Mishra et al., 2005 [62]

India

School

To plan interventions to prevent and control tobacco use among youth in India as part of Project MYTRI

435

10–16

181

254

Students in government and private schools

The MYTRI project (Mobilising youth for the tobacco related initiatives in India)

Focus group interviews

Level 3

The participants were informants

Morales-Campos et al., 2015 [38]

USA

Community

To develop an community-based intervention for physical activity among Hispanic girls

Part I-IV: 40

11–14

40

0

Hispanic middle school girls

Physical Activity Partnership for Girls (PG) project

Participatory Photo Mapping (PPM)

Part I: Photo walking tours in groups

Part II: Photo sharing group discussion

Part III: Creating a photo poster

Part IV: Presenting the photo poster

Level 3

The participants were informants

Power et al., 2004 [64]

Zimbabwe

School

To determine the feasibility and acceptability of conducting a community randomised trial of an adolescent reproductive health intervention in rural Zimbabwe.

N/S*

* In addition parents, school staff, community leaders and healthcare providers participated

12–17

N/S

N/S

Students in secondary schools

A Adolescent reproductive health intervention

Focus group interviews

Individual interviews

Observations

Level 3

The participants were informants

Power et al., 2010 [39]

USA

School

To inform the development of a multi-strategy, school-based obesity prevention programme for early adolescences

16*

* In addition 6 parents and 11 teachers participated

12–14

11

5

Students

A school-based prevention programme for adolescent obesity The Teen Eating and Activity Mentoring in Schools project (TEAMS)

Focus group interviews

Level 3

The participants were informants

Raghupathy et al. 2012 [40]

USA

School

To describe the process by which an existing evidence-based culturally relevant drug prevention intervention was transformed into a low cost computerised intervention (HAWK a computer and web-based intervention

Part I: N/S*

Part II: about 45*

* In addition community experts, scientists, school staff participated

N/S

11–13

N/S

N/S

N/S

N/S

Native American youth in reservations and rural locations

A computer as well as a web-based drug abuse prevention intervention, HAWK2 (Honoring Ancient Wisdom and Knowledge)

Part I: Video recording, photographs and script-making

Part II: Reviewing the prototype

Level 3

The participants were informants

Reinaerts et al., 2006 [56]

Netherlands

School

To explore factors that are associated with children’s fruit and vegetable (F&V) intake, to develop a school-based intervention to increase their F&V consumption

104*

*In addition 38 parents participated

3–14

50

54

Pupils in primary schools

A school-based intervention to increase fruit and vegetable consumption among primary school children

Focus group interviews

Level 3

The participants were informants

Resnicow et al., 2000 [41]

USA

Community

To develop and implement a nutrition and physical activity intervention

17

N/S

17

0

Overweight African American adolescent

A nutrition intervention for overweight African American adolescent women (Go Girls)

Focus group interviews

Level 3

The participants were informants

Sockolow et al. (2017) [43]

USA

Community

To develop and employ an innovative approach, Experiential Participatory and Interactive Knowledge Elecitation (EPIKE) to generate design and content requirements for a psychoeducational mobile health (mHealth) intervention

Part I, II: 22

Part III: 9

13–17

15

6

7

3

African Americans and Latinos adolescents

A mobile health (MHEalth) psychoeducational intervention for at-risk adolescent

Part I: Role play

Part II: Design sessions

Part III: Testing the prototype

Level 3

The participants were informants

Sorensen et al., 2004 [44]

USA

Community

To describe the formative research process that was used to develop a tobacco control intervention for working teens

Part I: 41

Part II: 375

N/S

15–18

N/S

179

N/S

196

Teens both smokers and non-smokers

A worksite-based tobacco control intervention for working teens SMART, Teens Against the Risks of Tobacco

Part I: Focus group interviews

Part II: Cross-sectional survey

Level 3

The participants were informants

Wright et al., (2016) [65]

Australia

Community

To develop and investigate the feasibility and acceptability of mobile phone-delivered data collection and intervention for young people during drinking events.

Part I: 42

Part II: 40

Part III: 40

18–25

21

yes

yes

21

yes

yes

Youths

An Mobile-Phone delivered Ecological Momentary Assessment (EMA) intervention for young people during drinking events

Part I: Workshops

Part II: Testing the intervention

Part II: Survey and in-depth interviews

Level 3

The participants were informants

Young et al., 2006 [45]

USA

School

To describe how formative research was used to design the Trial of Activity for Adolescent Girls (TAAG) intervention

Part I: 130

Part II: 87

Part III: 77

Phase IV: 100

N/S

130

87

0

100

0

0

77

0

Schoolchildren in 6–8 grade

An intervention to reduce decline of physical activity: Trial of Activity for Adolescent Girls (TAAG) intervention

Part I: Survey

Part II: Focus group interviews

Part III: Focus group interviews

Part IV: Focus group interviews

Level 3

The participants were informants

Arvidsson et al. 2016 [46]

Sweden

Healthcare

To redesign Sisom for use on mobile devices and to validate and adapt it for use in a Swedish population of children with cancer

10

6–11

4

6

Healthy children and children with cancer

An interactive computer-based assessment and communication tool to give children with cancer a “voice” in their care (SISOM 2)

Part I: Observations and Think aloud

Part II: Individual interviews

Part III: Drawing and writing

Level 4

The participants were informants, designers and evaluators of the intervention.

Cottrell et al., 2010 [30]

USA

Community

To describes the process used to identify community health beliefs and the development of theoretically based materials to increase participation

Part I: 92

Part II: 240

Part III: 5

mean 11

mean 10

mean 11

N/S

N/S

N/S

N/S

N/S

N/S

Schoolchildren in fourth and fifth grade

The Coronary Artery Risk Detection in Appalachian

Communities (CARDIAC) to reduce children’s future cardio-vascular risk by implementing a school-based screening programme

Part I: Individual and focus group interviews to expand and revise a Health Belief Questionnaire (HBQ)

Part II: Survey and the findings led to design and development of intervention

Part III: Focus group interviews. The intervention material revised according to the feedback

Level 4

The participants were informants, innovators and evaluators of the intervention.

Jenkins et al. 2016 [35]

Canada

Community

To develop the CollaboraKTion Framwork intervention for Community-Based Knowledge Translation to strengthening population health

10

13–18

N/S

N/S

Young people

An evidence-informed mental health promotion intervention as an web app

Part I: Weekly videoconference meetings

Part II: In-person meetings

Part III: Training sessions

Level 4

The participants were informants, designers and innovators of the intervention.

Ruland et al., 2008 [57]

Norway

Healthcare

To describe design challenges in the development of a clinical support tool for seriously ill children

Part I: 12*

Part II: 5*

Part III: 14*

Part IV: 10*

*A total number of 41 children (29 healthy children and 12 children with cancer)

9–11

9–11

8–12

7–11

7

2

4+4

N/S+4

5

3

4+2

N/S+2

Healthy children

Healthy children

Healthy children+Children with cancer

Healthy children+Children with cancer

A clinical support tool for seriously ill children with cancer to improve patient communication (SISOM)

Part I: Design groups with a think-aloud method, role plays

Part II: Individual interviews and observations

Part III: Individual interviews with selection of meaningful child-friendly terms used in the system and tested the prototype

Part IV: Usability tests with observations and video recording as end-users and the prototype was developed further

Level 4

The participants were informants, designers, innovators evaluators and testers of the intervention

Schultz et al., 2001 [42]

USA

Healthcare

To develop and evaluate theory-based interventions designed to change sexual behaviour and promote safer sex practices of HIV seropositive young men and adolescents with haemophilia

Part I: 59

Part II: 97*

*In addition parents to respondents under 18 were also surveyed

13–23

N/S

N/S

N/S

N/S

Adolescents.

A Haemophilia Behavioural Intervention Evaluation Projects (HBIEP)

Part I: Individual interviews to develop a questionnaire

Part II: Survey with the developed questionnaire and the findings of this determined the focus for the interventions

Level 4

The participants were informants and evaluators of the intervention

Stålberg et al., 2016 [58]

Sverige

Healthcare

To develop an interactive application to facilitate young children’s participation in healthcare situations

Part I: 43

Part II: 9

Part II: 33

Part IV: 9

3–5

22

7

13

5

21

2

20

4

Children from three settings; preschool, primary health care clinic and outpatient clinic

An application to facilitate young children’s participation in healthcare situations, the Inter-Active Communication Tool for Activities (IACTA)

Part I: Individual interviews and drawings

Part II: Tested and evaluated a paper prototype

Part III: Tested and evaluated the first interactive prototype

Part IV: Tested and evaluated the second interactive prototype

Level 4

The participants were informants, designers and testers of the intervention

Tan et al., 2011 [63]

Singapore

School

To describe the Creativity, Activities, Learnability, Storylines, Interactivity, Usability and Multimodality (CALSIUM) framework to elicit children’s contributions and perspectives in the design of an online game for enhancing social skills of children.

Part I, II, III: 12

10

6

6

Students in primary school

A computer game to increase social skills (Socialdrome)

Part I: Testing a prototype

Part II: Focus group interviews

Part III: Workshops to design a prototype using storyboarding

Level 4

The participants were informants, designers and testers of the intervention

Garofalo et al., 2012 [31]

USA

Community

To develop and pilot test a homegrown intervention addressing HIV prevention needs of young transgender women

Part I: N/S

Part II: 8

Part III: 7

N/S

16–24

16–24

yes

8

7

0

0

0

Young transgender women

An intervention to prevent HIV, the Life Skills

Part 1: Initiated the intervention with assistance of a research team

Part II: Focus group interviews refined the intervention

Part III: Pilot group tested the revised intervention and gave feedback on the content and logistical aspects of intervention delivery

Level 5

The participants were informants, designers, innovators evaluators and testers of the intervention

Kime et al., 2013 [52]

UK

Healthcare

To involve young people in developing a self-care intervention for young people with type 1 diabetes or asthma.

Part I: 87*

Part II: N/S*

* In addition 7 young adult facilitators (3 with diabetes type 1 and 4 with asthma), aged 18–25 years participated

12–17

40

N/S

47

N/S

Patients with diabetes type 1 (n = 41) and with asthma (n = 46)

A self-care intervention for young people to better manage diabetes type 1 or asthma and improve their overall quality of life

Part I: Focus group interviews with facilitators, aged 18–25 with the same diagnosis.

Part II: Design workshops with participants working alongside the researchers to decide the format of the intervention

Level 5

The participants were informants, designers, innovators evaluators and testers of the intervention

Wärnestål et al., 2017 [59]

Sweden

Healthcare

To develop digital peer support services (DPS) directed towards children surviving cancer in order to facilitate health-promoting social connectedness to other children with similar experiences.

Part I: 15*

Part II: 5

Part III: N/S*

* In addition there were 9 Stakeholders/ healthcare professionals and 4 parents in part II, III

8–12

11–13

N/S

15

2

N/S

0

3

N/S

Children with cancer

A Digital peer support services (DPS)

Part I: Focus group interviews

Part II: Design workshops with pairs of one participant and one researcher or one participant and one professional designers

Part III: Focus groups interview

Level 5

The participants were informants, designers, innovators evaluators and testers of the intervention

  1. N/S = not specified in the article
  2. Yes = Included in the article but the number of participants is not specified