A qualitative exploration of adolescents with severe haemophilia and their caretakers regarding their future transition to adult services

Objective: To qualitatively explore the views of adolescents with severe haemophilia A or haemophilia B and their caretakers such as parents and multidisciplinary staff relating to transition from child to adult services.

Methods: Qualitative design using semi-structured interviews based upon the Critical Incident Technique (CIT).

Results: Thematic analysis using the CIT approach identified five themes all of which pertained to either the positive or negative aspects of the transition programme for adolescents with severe haemophilia and their parents and MDT. The main issues that emerged in the themes were the change in independence, meeting peers, being prepared for inevitable change, apprehension and communication levels.

Conclusions: The findings from this study are tentative and more research is required on this topic. The aim of this study is to offer initial evidence that can be used to positively affect change in current practice