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By the age of 16 years at the latest, young people have the right to consent before receiving treatment.1 Well before that age, though, leaving children out of decision making could come at a serious cost. By the age of 13 years, young people with long-term conditions can be responsible for the majority of illness-related self-care. From the age of 11 years, they can be frustrated if they and their preferences are left out of decisions.2 Young and older teens say that happens a lot.2
Researchers report that, too.3 Authors observing interactions with children in hospital recently reported a common aspect of this: doctors and parents talking to each other as though the child was not there, some or all of the time.4 They stressed the importance of watching for children’s nonverbal communication, especially from young children.4
Healthcare practitioners might be overestimating how well they are doing at communicating with children and adolescents. A systematic review of paediatric shared decision making found 79 studies on barriers and facilitators.5 The most frequent obstacle reported by observers of interactions was a lack of practitioner skill in sharing decision making with young people. Some practices that are the antithesis of sensitive care are still apparently common—like holding children down against their will for procedures.4 6
There is no clear point at which a family-centred focus should allow for, or give way, to child-centred care. Child-centred care evolves, Foster and Shields say, through communication and choice.7 Providing information could encourage involvement.2 It could be easier for everyone to practise child-centred consultations in low-stake situations where there are genuine choices.5 Young people can feel betrayed if they are asked their opinions but that has no bearing on the outcome of a consultation—or if the adult with them gets asked the same question they were asked, and the adult’s answer carries more weight.2 Giving young people no role in a decision always carries a risk: opting out of treatment could be the only way a young person can take back some control, and that can cause serious harm.
Researchers have been sketching the outlines of what child-friendly and youth-friendly healthcare services are like, especially in the last few years. Staff attitude is a universal issue. Being interested in non-medical aspects of their lives, and sharing personal information, can be important to rapport with young people.8 There can be a frustrating vagueness in the academic papers, though, and a lack of infrastructure to back up good practice. For example, some of the studies in recent reviews point to the value of age-appropriate computer materials and leaflets, designed for children, with children. Regrettably, these are not created or available in high quality at scale across common or important health topics.
However, in other ways, the growth of research exploring the experience of consultations from children’s point of view is inherently useful. Söderbäck et al point out that we need to develop our understanding of children’s perspectives at every age for common healthcare situations.9 That strengthens the case for paying attention to the knowledge emerging from qualitative studies just as we do to those on drug and therapy effects. Each experience with the healthcare system is likely to be informing how a child approaches the next consultation, so listening and paying attention matter, at every age.9 Getter better at consultations with children is not going to overcome all the challenges of adolescents with health problems face in the transition to adulthood, of course, but it is critical.
Competing interests None declared. Refer to the online supplementary files to view the ICMJE form(s).
Provenance and peer review Commissioned; externally peer reviewed.