
This study focussed on identifying the key concerns and information needs of young people with Adolescent Idiopathic Scoliosis (AIS) and their parents and examined what resources might help improve young people’s ‘participativeness’ and health literacy during clinic consultations. Young people and their parents reported uncertainty and anxiety before coming to the clinic and faced issues participating in the consultation, being involved in decision-making and understanding the information and language. Young people’s health literacy relating to an AIS diagnosis and treatment is facilitated by them being prepared and informed before coming to the clinic and being actively supported to be involved during the consultation. This study collaboratively developed the ‘Coming to Spinal Clinic’ resource to help young people with AIS and parents prepare for and get the most out of their visit.
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