Exploring young patients’ perspectives on rehabilitation care: methods and challenges of organizing focus groups for children and adolescents.

BACKGROUND In research on quality of care, the experiences of children and (pre)adolescents are usually assessed by asking their parents. However, these young patients may have preferences of their own, and their experiences do not necessarily concur with those of their parents. Therefore, our research aimed to give young patients an opportunity to speak up for themselves. METHODS Focus group meetings and online focus groups were organized for two age groups (8–11 and 12–15 years) of young patients from two Dutch rehabilitation centres, with the use of a tailored interview technique. The feasibility and applicability of both types of focus groups were assessed. RESULTS For both types of focus groups, recruitment proved a major problem. The focus group meetings with (pre)adolescents proved both feasible and applicable in obtaining information regarding the preferences and experiences towards rehabilitation care. Regarding children's meetings, there were mixed results. The setting suited most of them, but some were more anxious. In general, online focus groups were less successful than expected for both age groups. CONCLUSIONS Possibilities for enhancing the recruitment rate should be considered, as the low participation rates limited generalizability of focus group results. The tailored design proved useful for obtaining relevant input from (pre)adolescents through meetings, but, especially for children, repeated meetings or other locations (e.g. at home) could be considered. This may make participants more at ease. For both age groups, the online focus groups proved far less useful, in terms of participation.