A national guideline for youth-friendly health services developed by chronically ill young people and health care professionals – a Delphi study

Abstract

Abstract Objectives Significant variation in cultural and socio-economic factors across different countries means that modification of existing guidelines for youth-friendly health services are needed. Furthermore, including the views and perspectives of young people in developing health services add significant value. The aim of this study was to develop a national guideline for youth-friendly health services using the Delphi method. Methods We invited young people with chronic conditions, managers of paediatric, psychiatric and relevant adult departments and health care professionals with experience and interest in adolescent medicine to participate. The initial list of elements was constructed based on international guidelines and systematic reviews. The study consisted of three electronic questionnaire rounds assessing relevance, importance and whether the elements were essential/very important, respectively. We used 70% agreement as cut-off. Results More than 70% of participants agreed that only one element was essential: ‘Young people should be actively involved in decisions about their treatment and encouraged and supported to ask questions about their illness and treatment’. Additionally, 18 elements reached more than 70% agreement, when the ‘essential’ was combined with the ‘very important’ category. We grouped these 19 elements into five themes: 1) staff competences and workflow, 2) developmentally appropriate communication, 3) focus on youth life, including mental health 4) youth participation and shared decisions, and 5) autonomy and transitional care. Conclusion This guideline for a youth-friendly health care system may serve as inspiration for concrete changes, both locally and internationally, as it was developed together by young people, staff, and management.