Understanding the needs and frustrations in adolescent idiopathic scoliosis: a qualitative interview study

Scoliosis is a common term used for a group of conditions that involve abnormal curvature and rotation of the spine, thorax, and trunk. If untreated, scoliosis may lead to severe trunk deformities, which consequently limit physical function, exercise capacity, general well-being, ability to work, and the mental health of affected individuals. Little is known about how adolescents with Adolescent Idiopathic Scoliosis (AIS) and their caregivers cope with scoliosis and what kind of needs, frustrations, and difficulties they experience during treatment.

This study aimed to explore the difficulties, needs, and frustrations experienced by adolescents with AIS and their caregivers.

An exploratory qualitative design was adopted. A total of 17 participants were recruited through purposive sampling with the aid of user organizations and hospitals in Norway from April to August in 2023. A total of five audio-recorded, semi-structured focus group interviews were conducted, transcribed verbatim, and analyzed using thematic analysis. The discussions focused on the needs, frustrations, and challenges of adolescents with AIS and their caregivers.

This study explored the needs for improvement in health care services related to AIS in Norway, from the perspectives of adolescents and caregivers. Participants reported a lack of communication and information surrounding AIS diagnosis, forcing them to actively seek help. Gaps were also reported, in post-operative follow-up care and conservative treatment of scoliosis, where adolescents with AIS feel overlooked and alone in their recovery and physiotherapy. Participants voiced frustrations, including the psychosocial impact of the condition which affects school attendance due to back pain and absence from activities, leading to feelings of isolation.

The study identified significant gaps in Norway's AIS health care services that could be addressed with digital solutions. Adolescents with AIS and caregivers reported inadequate communication, poor post-operative care, and struggles with conservative treatment.