This chapter is focused on understanding crucial concepts including adolescents, participatory research and health research and technology, and how and why these concepts can be related to each other. The chapter begins by providing a definition of adolescence. Why? Because depending on your culture and your background, this might mean something different to you. Participatory research is also an umbrella term for a series of methods which share commonalities but also important variations. These methods serve different purposes and uses. Some are more suitable to answer specific research questions than others. Therefore, a guide to this variety of methods – together with examples, facilitators and challenges – is given in this chapter.

1.1 What Is Adolescence?

The term adolescence originated from the Latin term adolescere which means ‘to grow maturity’ (Banati & Lansford, Reference Banati, Lansford, Lansford and Banati2018). It is important to acknowledge that adolescence is a social construction, defined by specific communities and cultures (Sawyer & Patton, Reference Sawyer, Patton, Lansford and Banati2018). Historically, adolescence begins with the onset of puberty (biological) and ends with social role transitions into adulthood (social), for example, employment, financial independence and parenting (Sawyer & Patton, Reference Sawyer, Patton, Lansford and Banati2018). The definition of adolescence, however, varies by country and cultural context (Patton et al., Reference Patton, Sawyer, Santelli, Ross, Afifi, Allen, Arora, Azzopardi, Baldwin, Bonell, Kakuma, Kennedy, Mahon, McGovern, Mokdad, Patel, Petroni, Reavley, Taiwo, Waldfogel and Viner2016), as well as historical time and location (Wulf-Andersen et al., Reference Wulf-Andersen, Folleso, Olsen, Wulf-Andersen, Folleso and Olsen2021a).

Adolescence has been defined as a transitional phase of life between the two more stable stages of childhood and adulthood (Wulf-Andersen et al., Reference Wulf-Andersen, Folleso, Olsen, Wulf-Andersen, Folleso and Olsen2021a). There are also biological changes that characterise this developmental stage (Patton et al., Reference Patton, Sawyer, Santelli, Ross, Afifi, Allen, Arora, Azzopardi, Baldwin, Bonell, Kakuma, Kennedy, Mahon, McGovern, Mokdad, Patel, Petroni, Reavley, Taiwo, Waldfogel and Viner2016). Adolescence is characterised by brain development and interaction with the social environment shaping the capabilities adolescents will bring to their adult life (Patton et al., Reference Patton, Sawyer, Santelli, Ross, Afifi, Allen, Arora, Azzopardi, Baldwin, Bonell, Kakuma, Kennedy, Mahon, McGovern, Mokdad, Patel, Petroni, Reavley, Taiwo, Waldfogel and Viner2016). The physical, psychological and cultural expressions of adolescence can appear at different times in a person’s life (Banati & Lansford, Reference Banati, Lansford, Lansford and Banati2018). Adolescents should not be understood as a specific age cohort (Wulf-Andersen et al., Reference Wulf-Andersen, Folleso, Olsen, Wulf-Andersen, Folleso and Olsen2021a). Adolescents in this stage acquire the physical, cognitive, emotional and economic resources that are the foundation for health and well-being later in life (Patton et al., Reference Patton, Sawyer, Santelli, Ross, Afifi, Allen, Arora, Azzopardi, Baldwin, Bonell, Kakuma, Kennedy, Mahon, McGovern, Mokdad, Patel, Petroni, Reavley, Taiwo, Waldfogel and Viner2016).

Adolescence has also been explained by theories of adolescent development. For example, Erik Erikson proposed an eight-stage model. The identity versus role confusion stage covers 12–18 years of age, with people of this age typically described as adolescents. In this stage adolescents affirm their ideals, values and sense of self, as well as experience rejection, which may lead to insecurity and confusion. Another classical theory of development is that of Jean Piaget. Adolescence corresponds to the fourth and last stage of his theory, the formal operational stage. This is a stage of the establishment of reasoning about tangible, hypothetical and abstract objects and manipulating mental representations. These classic models of development are informative; however, research has identified that not all children and adolescents follow these developmental trends. Determining adult–child communication solely by developmental ages and stages can be misleading, as this may underestimate or overestimate children’s and adolescents’ abilities (Alderson et al., Reference Alderson, Sutcliffe and Curtis2006), particularly those who have experienced illness or disability from a young age.

Wulf-Andersen et al. (Reference Wulf-Andersen, Folleso, Olsen, Wulf-Andersen, Folleso and Olsen2021a) defined adolescence as ‘a life stage in which social positions and processes shape young people’s ability to make choice, and their life chances, in particular historical and societal contexts’ (p. 12). Therefore, research and methods must be capable of dividing up and capturing the commonalities and differences between adolescents. Adolescents and researchers are not a homogeneous group and therefore specific research activities may impact young people and researchers differently (Wulf-Andersen et al., Reference Wulf-Andersen, Folleso, Olsen, Wulf-Andersen, Folleso and Olsen2021b). Research must not privilege the views and perspectives of specific groups of children and adolescents over others. According to Hampshire et al. (Reference Hampshire, Porter, Owusu, Mariwah, Abane, Robson, Munthali, Mashiri, Maponya and Bourdillon2012) differences in age, gender, class, wealth, disability, family situations and personality are bound up in complex power relations that ultimately shape the research carried out with these children and adolescents.

Even though adolescence should not be defined exclusively by age, sometimes this is needed to define the samples or populations that will be included or excluded from a research study. This has a practical justification; for example, the research resources and capacities for inclusion and other developmental markers of a specific culture or group where there is an agreement of adolescents as a group. Considering the limitations of this generalisation, defining a group by age may be justified. And, if so, the next challenge is to define the age boundaries of adolescence, on which there is no consensus either.

Under the United Nations Convention of the Rights of the Child (UNCRC), a child is defined as anybody under the age of 18. The World Health Organization defines adolescents as aged between 10 and 19 years of age, whereas youth is between 10 and 24 years of age (King et al., Reference King, Cormac, Edwards, Harris and Paine2022). Different definitions can also be found in published research studies; however, these use different groupings and terminology. For example, youth (15–24 years) (Patton et al., Reference Patton, Sawyer, Santelli, Ross, Afifi, Allen, Arora, Azzopardi, Baldwin, Bonell, Kakuma, Kennedy, Mahon, McGovern, Mokdad, Patel, Petroni, Reavley, Taiwo, Waldfogel and Viner2016), young people (10–24 years) (Patton et al., Reference Patton, Sawyer, Santelli, Ross, Afifi, Allen, Arora, Azzopardi, Baldwin, Bonell, Kakuma, Kennedy, Mahon, McGovern, Mokdad, Patel, Petroni, Reavley, Taiwo, Waldfogel and Viner2016), youth and teenagers (13–18 years) (Hart, Reference Hart1992) and young people is the umbrella term to refer to both groups (Hart, Reference Hart1992). Overall, the terminology used is complex and often differs across countries and social contexts (Gibbs et al., Reference Gibbs, Kornbluh, Bell and Ozer2020).

1.2 Participatory Health Research with Adolescents

Investing in adolescent health and well-being is beneficial today but the impact lasts over decades and into the next generation (Patton et al., Reference Patton, Sawyer, Santelli, Ross, Afifi, Allen, Arora, Azzopardi, Baldwin, Bonell, Kakuma, Kennedy, Mahon, McGovern, Mokdad, Patel, Petroni, Reavley, Taiwo, Waldfogel and Viner2016). Adolescent morbidity has an obvious consequence but also a cost for society. It is necessary to consider public accountability of money invested in adolescent programmes to reduce risk and improve adolescent health if these programmes are ineffective (Rogers et al., Reference Rogers, D’Angelo and Futterman1994). Adolescence is a time when individuals make increasingly complex decisions affecting their health and wellness (Flicker & Guta, Reference Flicker and Guta2008). Adolescents’ healthy development involves making informed decisions, managing risks and negotiating options regarding their health (Flicker & Guta, Reference Flicker and Guta2008). There are major knowledge gaps in adolescent health needs and, therefore, there is a lack of evidence base for action, civil structures for advocacy and the systems to ensure intersectoral action (Patton et al., Reference Patton, Sawyer, Santelli, Ross, Afifi, Allen, Arora, Azzopardi, Baldwin, Bonell, Kakuma, Kennedy, Mahon, McGovern, Mokdad, Patel, Petroni, Reavley, Taiwo, Waldfogel and Viner2016). Additionally, participation of adolescents in healthcare may be more viable in some countries than others. In some jurisdictions their involvement is compulsory. For example, the Medical Treatment Agreements Act (WGBO, 1995) is a Dutch Act where adolescents between 12 and 15 years can co-decide with their parents about their treatment. Adolescents over 16 years of age can make treatment decisions on their own. According to Van Staa et al. (Reference Van Staa, Latour and Trappenburg2009) these opportunities are limited in primary care. Particularly relevant to participatory methods, adolescents are often excluded from research that is necessary to improve their health and inform health policy (Society for Adolescent Medicine, 2003).

Research has a significant role in ensuring healthcare is sustainable, effective, efficient, safe and appropriate; however, society and health systems are not currently getting the maximum benefits from research findings (Jull et al., Reference Jull, Giles and Graham2017). Adolescent research is also disproportionately focused on adolescents in high-income Western contexts and is mostly published in English (Banati & Lansford, Reference Banati, Lansford, Lansford and Banati2018). Effective adolescent health programmes need adolescents’ involvement in designing programme objectives, policy development and allocation of resources (Ballonoff et al., Reference Ballonoff, Soleimanpour and London2006). Health disparities that adolescents experience will continue until they are fully engaged as partners and leaders in addressing social inequalities and health issues as well as planning and evaluating health programmes targeted at them (Ballonoff et al., Reference Ballonoff, Soleimanpour and London2006). Younger adolescents are usually missing from the data, which mostly focuses on those aged 15 years or over (Patton et al., Reference Patton, Sawyer, Santelli, Ross, Afifi, Allen, Arora, Azzopardi, Baldwin, Bonell, Kakuma, Kennedy, Mahon, McGovern, Mokdad, Patel, Petroni, Reavley, Taiwo, Waldfogel and Viner2016). Effective planning responses require data that is timely, developmentally appropriate and locally relevant. Ideally, data should be longitudinal and global, enabling analysis of differences between countries over time (Patton et al., Reference Patton, Sawyer, Santelli, Ross, Afifi, Allen, Arora, Azzopardi, Baldwin, Bonell, Kakuma, Kennedy, Mahon, McGovern, Mokdad, Patel, Petroni, Reavley, Taiwo, Waldfogel and Viner2016). Currently, low- and middle-income countries are dependent on global surveys for their own health policy and planning (Patton et al., Reference Patton, Sawyer, Santelli, Ross, Afifi, Allen, Arora, Azzopardi, Baldwin, Bonell, Kakuma, Kennedy, Mahon, McGovern, Mokdad, Patel, Petroni, Reavley, Taiwo, Waldfogel and Viner2016).

On a positive note, research with children and adolescents is increasingly using participatory approaches to inform health resources and interventions (Freire et al., Reference Freire, Pope, Jeffrey, Andrews, Nott and Bowman2022). Participatory health research is based on the premise that children and adolescents should be involved in decision-making processes about their health as this is a way to enhance and promote their self-esteem and positive self-regard, which can subsequently enhance their well-being (Coyne, Reference Coyne2006). Including adolescents in healthcare agendas is an acknowledgement that they are important consumers of healthcare, individually and collectively (Coad & Shaw, Reference Coad and Shaw2008). Giving citizens choice about services can improve standards, efficiency and increase patient-centred care (Coad & Shaw, Reference Coad and Shaw2008). Children and adolescents can express their views on living with chronic illness and disability, as well as communicate their needs and provide ideas on how to improve the quality of healthcare services (Van Staa et al., Reference Van Staa, Latour and Trappenburg2009). Coyne (Reference Coyne2006) asked children about being involved in decision-making and they expressed a need for consultation and information to help them understand their illness, prepare themselves for procedures and take actions towards ‘getting well’. The study found, however, that opinions were often underused, with some expressing a lack of consultation about bed allocation, food preferences, waking time and sleeping time.

Adolescence is the developmental stage where specific health problems emerge due to the beginning of sexual activity, emotional control and risky behaviour (Patton et al., Reference Patton, Sawyer, Santelli, Ross, Afifi, Allen, Arora, Azzopardi, Baldwin, Bonell, Kakuma, Kennedy, Mahon, McGovern, Mokdad, Patel, Petroni, Reavley, Taiwo, Waldfogel and Viner2016). Adolescence is also a time of academic disengagement and emerging psychopathology (Ozer et al., Reference Ozer, Ritterman and Wanis2010). Globally, adolescents can experience health issues as a consequence of unhealthy lifestyles, unemployment, lack of family stability, environmental issues, armed conflict and mass migration (Patton et al., Reference Patton, Sawyer, Santelli, Ross, Afifi, Allen, Arora, Azzopardi, Baldwin, Bonell, Kakuma, Kennedy, Mahon, McGovern, Mokdad, Patel, Petroni, Reavley, Taiwo, Waldfogel and Viner2016). Adolescents have several unmet needs in their healthcare, and they may experience barriers due to inexperience and lack of knowledge about how to access it; they can also experience confidentiality breaches (Patton et al., Reference Patton, Sawyer, Santelli, Ross, Afifi, Allen, Arora, Azzopardi, Baldwin, Bonell, Kakuma, Kennedy, Mahon, McGovern, Mokdad, Patel, Petroni, Reavley, Taiwo, Waldfogel and Viner2016), which could lead to a loss of confidence in the system overall. Adolescents should have accurate knowledge about local services and they should know where to turn to if they need help and advise their peers about where to find the help they need as well (Oppong-Odiseng & Heycock, Reference Oppong-Odiseng and Heycock1997). Over time, physical health in adolescents has improved; however, mental health issues have increased (Department of Health, 2003). Mental health issues are significant in adolescents as it is the age when mental health outcomes persist and can even worsen over time, even for adolescents in clinical care (Cheng et al., Reference Cheng, Davenport, Johnson, Vella, Mitchell and Hickie2018). A significant challenge is that research on adolescent health lacks indicators on topics such as mental health, substance disorders, obesity, physical activity and fruit and vegetable intake (Patton et al., Reference Patton, Sawyer, Santelli, Ross, Afifi, Allen, Arora, Azzopardi, Baldwin, Bonell, Kakuma, Kennedy, Mahon, McGovern, Mokdad, Patel, Petroni, Reavley, Taiwo, Waldfogel and Viner2016). Adolescence, however, is also the stage where opportunities for good health are created for adulthood (Whitehouse et al., Reference Whitehouse, Lam, Balka, Mclellan, Deevska, Penn, Issenman and Paone2013).

Overall, the way to achieve a fairer and healthier society is to improve health and overcome health inequalities early in life (Department of Health, 2003). Almost all the countries in the world have ratified the UN Convention on the Rights of the Child; however, there are vast differences in legal frameworks which underpin adolescent health. Additionally, in some countries customary or religious laws take precedence over adolescent rights (Patton et al., Reference Patton, Sawyer, Santelli, Ross, Afifi, Allen, Arora, Azzopardi, Baldwin, Bonell, Kakuma, Kennedy, Mahon, McGovern, Mokdad, Patel, Petroni, Reavley, Taiwo, Waldfogel and Viner2016). At a practical level, some hospital policies support child-centred services, for example. This means children and adolescents should be partners in decision-making and exercise choice about their health and care (Coyne, Reference Coyne2008). Despite this, children and young people are rarely involved in consultations and decision-making regarding their healthcare. Coyne (Reference Coyne2008) identified some of the reasons for this as:

1. 1. not knowing health professionals

2. 2. not wanting to hear bad news

3. 3. fear of asking questions and causing trouble

4. 4. being ignored

5. 5. not being believed

6. 6. experiencing difficulties contacting health professionals

7. 7. not being listened to

8. 8. difficulty understanding medical terms.

Healthcare professionals and parents have a significant role in enabling adolescent participation (Coyne, Reference Coyne2008). Healthcare professionals usually direct conversations mostly to parents, and children and adolescents become accustomed to playing a passive role or may assume this role to avoid censorship from adults (Coyne, Reference Coyne2008). The situation can be more difficult for specific groups of adolescents, as they experience added exclusion and vulnerability; for example, the needs of ethnic minorities, LGBTQ+ people, those with disabilities and those who are homeless or in juvenile detention are usually invisible (Patton et al., Reference Patton, Sawyer, Santelli, Ross, Afifi, Allen, Arora, Azzopardi, Baldwin, Bonell, Kakuma, Kennedy, Mahon, McGovern, Mokdad, Patel, Petroni, Reavley, Taiwo, Waldfogel and Viner2016). Seldom are children and adolescents with disability and chronic illnesses involved in health service development (Sloper & Lightfoot, Reference Sloper and Lightfoot2003; Watson et al., Reference Watson, Abbott and Townsley2006). Adolescent involvement is possible and can generate benefits for them. There is currently, however, a gap in children’s and adolescents’ own views of their experiences in service development (Sloper & Lightfoot, Reference Sloper and Lightfoot2003). There is a lack of evaluative research to determine if adolescents’ decisions and choices are acted upon and if healthcare providers are responsive to their needs (Coad & Shaw, Reference Coad and Shaw2008). Hallström and Elander (Reference Halström and Elander2004), for example, explored decision-making of parents and children aged 5 months to 18 years during hospitalisation and identified that children and parents made few decisions themselves and, if they disagreed with a decision, on very few occasions was that reconsidered. The authors argue that children and adolescents may not have the knowledge to make decisions about medical interventions but that they can participate when decisions are made.

When including adolescents in research and service development, methodology is fundamental. Stafford et al. (Reference Stafford, Laybourn and Hill2003) suggested that there is an increasing tendency in research with children and adolescents to use a combination of methods, as this can help overcome the limitations of a single method. It has been established that a single method cannot capture the fullness of the experience of participants and therefore the use of multiple methods can also help active engagement (Stafford et al., Reference Stafford, Laybourn and Hill2003). According to Larsson et al. (Reference Larsson, Staland-Nyman, Svedberg, Nygren and Carlsson2018), methodology can convert a traditional top-down research paradigm into a more egalitarian one, increase credibility and reduce biases by triangulating different data sources. Methods that enable participants to actively express themselves – including drawing, painting, storytelling, software, digital tools and mapmaking – achieve higher levels of participation (Larsson et al., Reference Larsson, Staland-Nyman, Svedberg, Nygren and Carlsson2018). These methods are not a guarantee of a participatory approach, but they can promote a sense of control in participants that may lead to more active participation (Larsson et al., Reference Larsson, Staland-Nyman, Svedberg, Nygren and Carlsson2018).

Setting is another important element to consider when carrying out participatory health research. For example, Sartain et al. (Reference Sartain, Clarke and Heyman2000) showed that episodes of illness and unfamiliar environments (e.g. hospital settings) may have an effect on the cognitive and behavioural activities of children. This may also have an impact on research and data collection and the answers participants provide as a result of a crisis or a specific situation, which may not have been their answer in different and more familiar circumstances.

Sommer et al. (Reference Sommer, Ibitoye, Likindikoki and Parker2021) suggest that it is essential to use creative approaches that have rigorous designs, capture the richness of the data and empower adolescents to capture their perceptions, desires, experiences and recommendations. Additionally, Sommer et al. (Reference Sommer, Ibitoye, Likindikoki and Parker2021) suggest that data triangulation can be very useful to gather in-depth sensitive data such as that regarding adolescent alcohol consumption and sex life. Triangulation can combine, for example, participatory and more traditional methods such as in-depth interviews.

Hagen et al. (Reference Hagen, Collin, Metcalf, Nicholas, Rahilly and Swainston2012) provided useful suggestions for adequate methodologies by research purpose or objective, as shown in Table 1.1.

There is also no ‘right method’ as different methods will suit different adolescents; every method will suit a different research purpose, so the ‘fit’ should be carefully considered (Lightfoot & Sloper, Reference Lightfoot and Sloper2002). The skills and experience of the research team are therefore crucial to select the most suitable method or combination of methods according to the research aims, objectives and resources available.

Incorporating adolescents with special needs and characteristics is a challenge. Working with adolescents with a chronic illness or disability requires serious consideration regarding their needs. For example, Lightfoot and Sloper (Reference Lightfoot and Sloper2003) experienced challenges with data collection with adolescents as they wanted to carry out group interviews but participants with cystic fibrosis, for example, were at a high risk of cross-infection in group situations. This shows that researchers should consider the specific diagnoses of potential participants when designing studies. Additionally, children with chronic illnesses should not be treated as a homogenous group, but their abilities, diversities and specific illness needs should be taken into consideration (Sartain et al., Reference Sartain, Clarke and Heyman2000). B. Young et al. (Reference Young, Dixon-Woods, Windridge and Heney2003) identified that managing communication with adolescents who have a life-threatening chronic illness can be complex, as parents have an important role in communication, and they can both facilitate and constrain that communication. Health professionals, as well as researchers, need to be aware of the executive roles parents have when professionals seek a relationship with adolescents (B. Young et al., Reference Young, Dixon-Woods, Windridge and Heney2003). This may explain why participation of adolescents with chronic conditions in medical decision-making and service evaluation is limited (Van Staa et al., Reference Van Staa, Latour and Trappenburg2009).

Burstein et al. (Reference Burstein, Bryan and Chao2005) carried out a study with adolescents with special health needs using a participatory action research (PAR) approach. Adolescent diagnoses included spina bifida, cerebral palsy, traumatic brain injury, spinal cord injury, epilepsy and errors of metabolism. The research study was carried out by the researchers and three adolescents with special needs themselves. It is important to note that these adolescents had specific characteristics and experiences that made them suitable for this role. Two adolescents had taken part in the pilot study and another adolescent had previous experience working with adults with acquired disability and was a community advocate (Burstein et al., Reference Burstein, Bryan and Chao2005). Burstein et al. (Reference Burstein, Bryan and Chao2005) used different technology to support data collection; however, alternative methods were also available to cater for the different needs of participants, therefore maximising active participation. The Youth Individualized Planner consisted of emergency medical information, medical records and a daily planner. It also included data collection sheets, weekly and monthly summaries of health status, social events and records of research goals. The Personal Digital Assistant recorded participants’ personal data digitally and this information could be downloaded for tracking, analysis and graphing. This tool was particularly suitable for those adolescents that struggled to write (Burstein et al., Reference Burstein, Bryan and Chao2005). Burstein et al. (Reference Burstein, Bryan and Chao2005) argue that PAR is ideal to work with adolescents with disabilities, as it is empowering and focused on identifying solutions for participant problems.

1.3 Adolescents, Technology and Health

Technology is becoming and will continue to be the driving force of economic growth and social development; however, investment in digital education is low (Banati & Lansford, Reference Banati, Lansford, Lansford and Banati2018). Contemporary life is saturated with technology and media and these drive and transform society, culture and individuals (Moyer, Reference Moyer2023). It is therefore important to ask how adolescents navigate their identity and perceptions within this heavily mediated society in which they live (Moyer, Reference Moyer2023).

Technology is a seamless part of how adolescents conduct their lives (Flicker et al., Reference Flicker, Maley, Ridgley, Biscope, Lombardo and Skinner2008). New media and technology are now a central part of adolescents’ lives, resulting in new forms of communication, identity formation and social relations (Mallan & Singh, Reference Mallan and Singh2010). Adolescents are having to adopt technologies at a faster rate (Moyer, Reference Moyer2023). Adolescents tend to embrace new technologies, currently representing an estimated one in three users worldwide (Gibbs et al., Reference Gibbs, Kornbluh, Bell and Ozer2020).

Technology and new digital media provide opportunities for adolescents to nurture skills, connect with others and engage in meaningful play. They also offer skills that can support their future careers, civic engagement and contribute to overall good (James et al., Reference James, Davis, Flores, Francis, Pettingil, Rundle and Gardner2009). Adolescents can engage with new digital media in many ways and therefore can assume a variety of different roles (James et al., Reference James, Davis, Flores, Francis, Pettingil, Rundle and Gardner2009) including the ones shown in Table 1.2.

One of the challenges of involving technology in research with adolescents is the fact that there is still an uneven access, due to several factors including geographical and economic inequalities. These differences shape the ways in which adolescents use and interact with technology in their daily lives (Mallan & Singh, Reference Mallan and Singh2010). It is therefore necessary as researchers to reflect on how your study will approach these inequalities. Will the research continue to reinforce the existing inequalities? For example, by including those who currently have access or to instead take a more democratic approach and include those who have traditionally been excluded or have had limited access. This, of course, is determined by many factors such as local access to resources such as internet access and funding. How much of the research funding can support democratisation of technology? For example, by providing adolescents with hardware to increase their access or software to be involved in a study. At the very least, research studies should be transparent and explicit about how these inequalities were given careful consideration and a description of the efforts made to reduce them. They should also include the reasons why these inequalities (geographical, economical, structural) were not dealt with if this were the case.

Researchers working with adolescents and technology should not assume that all adolescents are interested in technology, that they are all tech-savvy and have the skills and knowledge to work with technology successfully. The reality is they may not be. Research with technology should also be transparent and admit that studies using technology will probably include a sector of adolescents who are interested and possibly confident in the use of technology. As Mallan and Singh (Reference Mallan and Singh2010) suggested, the social realities and lived experiences of adolescents are different; there is no ‘one best’ approach to researching their experiences.

Rapid advances in technology can provide opportunities for adolescents to influence health policy and practice (Gibbs et al., Reference Gibbs, Kornbluh, Bell and Ozer2020). ‘Adolescents are not passive technology users but active agents capable of widespread social change’ (Gibbs et al., Reference Gibbs, Kornbluh, Bell and Ozer2020, p. S15). Technology can be an opportunity to appeal to adolescents and engage them in health promotion (Flicker et al., Reference Flicker, Maley, Ridgley, Biscope, Lombardo and Skinner2008). For example, health intervention with adolescents has been traditionally delivered face-to-face in individual or group sessions. This means sessions rely on factors such as ability to travel, time commitment and financial capacity of participants (Malloy et al., Reference Malloy, Partidge, Kemper, Braakhuis and Roy2023). The digitalisation of healthcare can contribute to facilitating reach and access to health services (Malloy et al., Reference Malloy, Partidge, Kemper, Braakhuis and Roy2023). Adolescents who are active technology users may be suitable to produce adequate content that is attractive to their peers (Oridota et al., Reference Oridota, Shetty, Elaiho, Phelps, Cheng and Vangeepuram2023). Social media can provide a ‘voice’ for adolescents to engage with peers and communities (Patton et al., Reference Patton, Sawyer, Santelli, Ross, Afifi, Allen, Arora, Azzopardi, Baldwin, Bonell, Kakuma, Kennedy, Mahon, McGovern, Mokdad, Patel, Petroni, Reavley, Taiwo, Waldfogel and Viner2016). Digital media has the potential to improve the sharing and presentation of data, generate new data, improve the quality of data and enable data sharing with a wider audience (Patton et al., Reference Patton, Sawyer, Santelli, Ross, Afifi, Allen, Arora, Azzopardi, Baldwin, Bonell, Kakuma, Kennedy, Mahon, McGovern, Mokdad, Patel, Petroni, Reavley, Taiwo, Waldfogel and Viner2016). New media is an opportunity to extend adolescents’ social networks and engage with new ideas and like-minded peers despite cultural and geographical differences (Patton et al., Reference Patton, Sawyer, Santelli, Ross, Afifi, Allen, Arora, Azzopardi, Baldwin, Bonell, Kakuma, Kennedy, Mahon, McGovern, Mokdad, Patel, Petroni, Reavley, Taiwo, Waldfogel and Viner2016). Technology, therefore, offers a possibility of having the healthiest generation of adolescents ever (Patton et al., Reference Patton, Sawyer, Santelli, Ross, Afifi, Allen, Arora, Azzopardi, Baldwin, Bonell, Kakuma, Kennedy, Mahon, McGovern, Mokdad, Patel, Petroni, Reavley, Taiwo, Waldfogel and Viner2016).

1.4 Participation

Participation is defined by Hart (Reference Hart1992) as the ‘process of sharing decisions which affect one’s life and the life of the community in which one lives’ (p. 5). It is described as a fundamental right of citizenship; according to Hart (Reference Hart1992) participation is the standard by which democracies should be measured. This definition, however, excludes children and adolescents who do not live in a democratic regime or culture which means their participation is already limited by the context they live in, and research may reinforce this. Participation becomes particularly relevant for children who live in disadvantage, as this is an opportunity to learn about their capacity and ability to fight for their rights in equality and solidarity with others and also to exert their rights (Hart, Reference Hart1992).

Participation as a democratic exercise requires confidence and competence; according to Hart (Reference Hart1992) these must be acquired gradually through practice. Participation also requires motivation from adolescents. Adolescents can manage complex projects if they have a sense of ownership (Hart, Reference Hart1992). In research, this means involving adolescents in designing project aims, for example (Hart, Reference Hart1992).

Participation is a multidimensional concept. According to Sinclair (Reference Sinclair2004) it is made up of four components:

1. 1. Level of participation. The level of participation can be determined using different models of participation, for example Hart’s ladder of participation; however, there are several models that are described in more detail in Chapter 10. The ideal level of participation may be different depending on the activity, the project or the organisation.

2. 2. Focus of the decision-making. The focus of decision-making may vary depending on the target, whether it is service planning, service development, policy, or decisions targeted at a specific organisation only. Private refers to decision-making within the family context or between people. Public refers to public services. Additionally, decisions may also relate to the child individually and others may affect the whole group.

3. 3. Nature of the participatory activity. Participation activities can have many different forms, for example one-off consultations, involvement in governance or adolescent-led initiatives.

4. 4. Children and adolescents involved. Children in this case are defined as those under 18 years of age (UNCRC definition). This, however, includes a very diverse group with different personal circumstances (age, sex, ethnicity, culture, disability, social and economic circumstances), interests and capacities, which also change over time as children grow. Therefore, there should be an array of forms of engagement and dialogue that ‘start from the position of the child’ (Sinclair, Reference Sinclair2004, p. 109), independent of their age or ability.

Specifically, regarding different levels of participation, adolescents may have various roles in research, which are described by Checkoway and Richards-Schuster (Reference Checkoway and Richards-Schuster2003) in Table 1.3.

1.5 Participatory Research

Defining participation is challenging; therefore, defining participatory research is challenging, as different authors have overlapping principles, but add or focus on different aspects. Some authors emphasise participants’ creation of knowledge as the ultimate characteristics of participatory methods. For example, Foster-Fishman et al. (Reference Foster-Fishman, Nowell, Deacon, Nievar and McCann2005) highlighted that the role of the researcher is to facilitate knowledge creation and support participants to discover their own understandings to facilitate them in creating change. Participatory methods promote participant control over what knowledge is generated and how it is used, and they foster learning through action and reflection (Foster-Fishman et al., Reference Foster-Fishman, Nowell, Deacon, Nievar and McCann2005). Participatory research is ‘carried out with and by the research subjects rather than on them’ (Van Staa et al., Reference Van Staa, Latour and Trappenburg2009, p. 96).

Knowledge produced in participatory research is used to guide and achieve collective change in communities, organisations, programmes and research participant themselves (Powers & Tiffany, Reference Powers and Tiffany2006). Additionally, knowledge generated through participation is culturally relevant and connected to the lived experience of participants, therefore it is more readily converted into action compared with academic theory and knowledge generated by outsiders (Wridt, Reference Wridt, Lansford and Banati2018).

Participatory research ‘can fall between the crack that separates intention from action’ (Mallan & Singh, Reference Mallan and Singh2010, p. 269). There are several factors that can lead to this fall including institutional, generational and ideological ones. Institutional ones may include funding timelines and expectations. According to Mallan and Singh (Reference Mallan and Singh2010) there is an inevitable mismatch between the world views of researchers and participants. Practical reasons may include negotiating spaces for adolescents that can meet the ethical expectations from schools, parents and universities (Mallan & Singh, Reference Mallan and Singh2010).

Participatory approaches have shown promise in increasing participation with adolescents that have been historically underrepresented in research, for example adolescents of colour and immigrants (Valdez et al., Reference Valdez, Valdez and Garcia2021). Geppert (Reference Geppert2023) chose a participatory design in a research study with adolescents who were marginalised by race, class, ethnicity, gender and sexuality.

1.6 Adolescent Participation

Adolescent participation approaches is an umbrella term which encompasses a variety of ways in which adolescents can provide their expertise, from informal sharing in adult-led environments to more formal advisory boards and councils, and systematic youth-generated research as well as structured planning and design processes (Ozer et al., Reference Ozer, Afifi, Gibbs and Mathur2018). Participatory approaches share the principle that young people have the expertise to address issues that have an impact on them; however, they differ in their emphasis on research and equity (Ozer, Reference Ozer2016).

Adolescent participation is the process of sharing decision-making on issues that affect adolescents and their communities (de Winter & Noom, Reference De Winter and Noom2003; Shamrova & Cummings, Reference Shamrova and Cummings2017). Participatory research involves adolescents not as ‘the problem’ but as ‘subjects of knowledge’ who can identify, understand and find solutions for social problems (Wulf-Andersen et al., Reference Wulf-Andersen, Folleso, Olsen, Wulf-Andersen, Folleso and Olsen2021a, p. 6). Not listening to the views of children and young people on matters that affect them is wrong, as it is a breach of their human rights (Lundy, Reference Lundy2018). Also, not seeking their views on the basis that it would be tokenistic is also wrong (Lundy, Reference Lundy2018). This means it is also wrong of adults to encourage participation if adolescent views are not given due weight (Lundy, Reference Lundy2018). Providing participants with the results of the research study is important; however, it is more important to also provide feedback on how their views are taken seriously (Lundy, Reference Lundy2018). This is described by Lundy (Reference Lundy2018) as the necessary minimum, but researchers should encourage adults to engage in more meaningful ways.

Adolescent participation is therefore recommended practice; however, this has challenges, both logistical and ethical (Schelbe et al., Reference Schelbe, Chanmugam, Moses, Saltzburg, Williams and Letendre2014). Participation requires effort, resources and time, ensuring participants have access to information, understand the research topic and support provision (Lundy, Reference Lundy2018). Adolescent participation is uneven; some participate with fervour and others may express interest but may be unsure about how to deal with the research process (Checkoway & Richards-Schuster, Reference Checkoway and Richards-Schuster2003). Others may participate but lack support from adults or face obstacles to their participation (Checkoway & Richards-Schuster, Reference Checkoway and Richards-Schuster2003). Participation is always imperfect (Lundy, Reference Lundy2018). This is not bad; this is the validation that ‘real world research’ is challenging and there is no expectation of perfection, which is not the same as ethical and good practice, which should be the goal.

Participation quality is not measured by the quantity of adolescents who are involved in the research; it is measured by its effectiveness when adolescents influence the process, how they have an impact on decisions or how their involvement leads to a favourable outcome (Checkoway & Richards-Schuster, Reference Checkoway and Richards-Schuster2003). Additionally, participants may have not perceived or understood the process as participatory for themselves (Holland et al., Reference Holland, Renold, Ross and Hillman2010), even it was intended as participatory research design.

Adolescent participation can have several benefits and provide significant skills for adolescents. Benefits of participation can have a long-term impact. For example, de Winter and Noom (Reference De Winter and Noom2003) used the participatory method in their research project as a model that could be adapted and used by agencies and institutions dealing with adolescents to enhance their dialogue and quality of care over time. Some of the benefits of adolescent participation are enumerated below:

1. 1. Social action. Participation can be a way to develop knowledge for social action. Adolescents want to act, improve their communities and provide credible information for action-taking (Checkoway & Richards-Schuster, Reference Checkoway and Richards-Schuster2003).

2. 2. Political rights. Participation can enable adolescents to exercise their political rights (Checkoway & Richards-Schuster, Reference Checkoway and Richards-Schuster2003).

3. 3. Democratisation of knowledge. Adolescents can mobilise knowledge to break the monopoly on it and enable youth to have information they need for competent citizenship (Checkoway & Richards-Schuster, Reference Checkoway and Richards-Schuster2003).

4. 4. Active participation in democratic society. Participation can activate adolescents’ civic engagement and enable reflection about problems in their community as well as acting in civil society (Checkoway & Richards-Schuster, Reference Checkoway and Richards-Schuster2003). It can also empower them to create social change (Powers & Tiffany, Reference Powers and Tiffany2006).

5. 5. Social development. Adolescent participation can encourage social development in adolescents by increasing their involvement, organisational development and their capacity to generate change in their community (Checkoway & Richards-Schuster, Reference Checkoway and Richards-Schuster2003). Adolescents can also serve as role models to other youth as experts with local knowledge about issues that affect them (Powers & Tiffany, Reference Powers and Tiffany2006).

6. 6. New relationships. Adolescents can form new relationships with adults and members of the broader community (Powers & Tiffany, Reference Powers and Tiffany2006).

Participation can also foster psychological well-being (de Winter & Noom, Reference De Winter and Noom2003) and civic engagement as well as increased self-confidence (Van Staa et al., Reference Van Staa, Latour and Trappenburg2009) and an opportunity for meaning-making for research participants. Van Staa et al. (Reference Van Staa, Latour and Trappenburg2009) found that taking part in the study turned participants’ illness into a positive experience (Van Staa et al., Reference Van Staa, Latour and Trappenburg2009).

Fox et al. (Reference Fox, Mediratta, Ruglis, Stoudt, Shah, Fine, Sherrod, Torney-Puta and Flanagan2010) argue that the lack of access to civic engagement is sometimes misinterpreted as a lack of motivation. It should be noted that significant differences in race and social class can lead to uneven opportunities of participation for children and adolescents. M. Fox et al. (Reference Fox, Mediratta, Ruglis, Stoudt, Shah, Fine, Sherrod, Torney-Puta and Flanagan2010) identified poor, working-class youth of colour and immigrant adolescents as more likely to have fewer opportunities for meaningful involvement in civic engagements and have too many family responsibilities that hinder their full participation. Fox et al. (Reference Fox, Mediratta, Ruglis, Stoudt, Shah, Fine, Sherrod, Torney-Puta and Flanagan2010) enumerated five principles that are crucial for critical adolescent engagement. These principles share many similarities with participatory research principles:

1. 1. Children and adolescents are a source of knowledge and power. Children and adolescents have important knowledge about their social conditions and have ideas about social change, meaning they have political wisdom and an understanding of injustice. Traditional epistemologies where researchers and elders are the ones in possession of valid knowledge are questioned. Instead, multigenerational collectives of adults and adolescents gather to share their experience, knowledge and ideas about social inquiry. In the research context, research questions, methodological approaches and data analysis are made across the different age groups.

2. 2. A critical analysis to facilitate critical consciousness of history, privilege and power. Adolescents’ engagement requires the spaces designated for critical community education where adolescents can develop a systemic perspective of their life circumstances and the impact on their lives of issues like racism, sexism, homophobia and classism which perpetuate inequality. This understanding is the basis of planning, researching, mobilising and campaigning for change.

3. 3. Youth leadership in partnership with adults. At the core of critical youth engagement is adolescent voice and empowerment. The role of adults is to actively guide and educate adolescents with a spirit of mutual inquiry, collaboration and problem-solving. The role of adolescents is to take the lead to generate ideas, facilitate meetings and make decisions. To support adolescents in this role, adults can help them identify relevant information, share knowledge and insights, role play, rehearse, listen and challenge.

4. 4. Intersectionality. Analysing and organising across sectors of everyday life: Critical youth engagement is founded on the idea that different sectors of public life are not separate but are woven into the lives and communities of adolescents. These sectors are health, criminal justice, education, housing, immigration status and economics. Adolescents study and organise within and across all these sectors. Understanding these aspects that shape the lives of adolescents creates the conditions for critically envisioning an alternative future. Cook and Krueger-Henney (Reference Cook and Krueger-Henney2017) additionally consider that unequal structures, such as marginalisation and discrimination, impact adolescents in different ways; every adolescent is implicated as they are bound within the same sociopolitical power dynamics.

5. 5. Collective action for social change. Adults and adolescents can use an intersectional lens to analyse problems in a historical and structural manner to mutually develop strategies for collective action which challenges those same problems. This creates a sense of collective efficacy where everyone must contribute to the effort. This collective efficacy means everyone shares a perception of mutual trust and willingness to help community members in need. This is further supported when it has positive effects on health and student academic achievement.

Participatory research methods are also beneficial for researchers. Sharpe et al. (2022) explained that participatory methods are very suitable for researchers who want to use their creativity to develop inclusive, accessible and adolescent-centred research.

Participatory research also has challenges. It can be more research-intensive, time-consuming, complicated and less efficient than traditional research (Van Staa et al., Reference Van Staa, Latour and Trappenburg2009).

Finally, a concept closely related with participation is co-participation. Although they are presented as separate concepts in research, they have many commonalities. Co-participation, as well as participation, defines children and young people as co-constructors of knowledge as well as co-designers and facilitators of research (Purdy & Spears, Reference Purdy and Spears2020). For co-participatory research, the process of research inquiry is as important as the product, findings, outputs and outcomes (Purdy & Spears, Reference Purdy and Spears2020).

1.7 Participatory Methods

The following sections of this book explore different methods that share participatory principles but have some epistemological and practical differences. These should not be used interchangeably in research, even if they have shared similarities; these are methods in their own right.