Build our youth for the future in paediatrics and beyond

‘We cannot always build the future for our youth but we can build our youth for the future’. This statement by Franklin D. Roosevelt (1882–1945) still holds true and speaks to the need to provide all youths with the supports and opportunities they need to develop. Research findings indicate that school-aged children with chronic conditions, regardless of their diagnosis, are more limited in their participation in everyday life than their peers (1–3).Little research exists about whether these challenges and developmental gaps between youth with chronic conditions and those without persist into emerging adulthood (4). Through the recent study by Verhoof and colleagues, we now know that many youths with chronic conditions experience a negative developmental trajectory (5).It is alarming that many young adults with a range of chronic conditions or disabilities do not work as much as they are able to. In other words, they ‘grow into disability benefits’. The authors found that Dutch young adults (aged 22–31 years) score significantly lower than their peers in autonomy, psychosexual functioning and social functioning. Lower scores were associated with a lack of experiences at a younger age (5). In summary, children with chronic conditions currently show more negative than positive outcomes, and in adulthood, they do not catch up with their healthy peers. Verhoof and colleagues (5) argue for systematic attention by paediatric health care providers to the psychosocial developmental trajectories of youth. While paediatricians can hardly disagree with this call for action, the question is how the paediatric community should mobilize to change this situation. There is a growing interest in understanding the developmental trajectories of youth both with chronic disease or disability and without, as well as their transition to adulthood and their adult experiences and outcomes. Existing literature on youth with chronic conditions or disabilities, however, is largely focused on risk factors and the achievement of indicators of adulthood such as finishing education, starting a career, leaving home and forming a couple (Stewart D, Personal communication). Many of these indicators are normative in nature resulting in disadvantaged or ‘negative’ outcome profiles, or at least a delayed trajectory, as is found in the study by Verhoof et al.. Today, the views on the developmental trajectories of youth and transition to adulthood are changing, as are the important outcomes: From a deficit-focused model, we are moving towards a strengthbased approach, from traditional indicators or limitations to positive and individualized outcomes such as citizenship and meaningful participation (6–8). For all youths, and in particular for youth with chronic conditions or disabilities, it is of utmost importance to provide support through developmentally appropriate life experiences and regular opportunities. It is through early work experience, participation in social events and – to some extent – trying risk behaviour that teenagers learn about themselves and the world around them. On an individual level, health care providers should encourage youth with chronic conditions to take part in activities. It is also important that, from a young age, the future of these children and adolescents is discussed with parents in a positive light. On a programme level, Verhoof et al. Invited Commentary for Eefje Verhoof et al. Growing into disability benefits? Psychosocial course of life of young adults with a chronic somatic disease or disability, pages e19–e26. Acta Pædiatrica ISSN 0803–5253