Understanding the needs and frustrations in adolescent idiopathic scoliosis: a qualitative interview study.
9 affiliations
- 1Department of Rehabilitation Science and Health Technology, Faculty of Health Sciences, Oslo Metropolitan University (OsloMet), Oslo, Norway. [email protected].
- 2Department of Product Design, Faculty of Technology, Art and Design, Oslo Metropolitan University (OsloMet), Oslo, Norway.
- 3Department of Rehabilitation Science and Health Technology, Faculty of Health Sciences, Oslo Metropolitan University (OsloMet), Oslo, Norway.
- 4Department of Psychology, University of Oslo, Oslo, Norway.
- 5Division of Mental Health and Addiction, University of Oslo, Oslo, Norway.
- 6Department of Life Sciences and Health, Faculty of Health Sciences, Oslomet University, Oslo, Norway.
- 7Department of Sociology and Social Network, University of Agder, Kristiansand, Norway.
- 8Norwegian Spine and Back Pain Association, Oslo, Norway.
- 9Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore.
Abstract
Background
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.Aim
This study aimed to explore the difficulties, needs, and frustrations experienced by adolescents with AIS and their caregivers.Methods
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.Results
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.Conclusion
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.
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BibTeX
@article{sykorova2026understanding,
title = {{Understanding the needs and frustrations in adolescent idiopathic scoliosis: a qualitative interview study.}},
author = {Kamila Sykorova and Nenad Pavel and Anna Mathew and Marianne Bakke Johnsen and June Ullevoldsæter Lystad and Helen Christine Bull and Parisa Gazerani and Mette Fløystad Kvammen and He Hong-Gu and Julia Jacoby and Minna Annika Pikkarainen},
journal = {BMC musculoskeletal disorders},
year = {2026},
month = aug,
doi = {10.1186/s12891-026-10210-7},
url = {https://europepmc.org/article/MED/42958195},
note = {CC BY},
}
RIS
TY - JOUR
TI - Understanding the needs and frustrations in adolescent idiopathic scoliosis: a qualitative interview study.
AU - Kamila Sykorova
AU - Nenad Pavel
AU - Anna Mathew
AU - Marianne Bakke Johnsen
AU - June Ullevoldsæter Lystad
AU - Helen Christine Bull
AU - Parisa Gazerani
AU - Mette Fløystad Kvammen
AU - He Hong-Gu
AU - Julia Jacoby
AU - Minna Annika Pikkarainen
PY - 2026
DA - 2026/08/01
JO - BMC musculoskeletal disorders
DO - 10.1186/s12891-026-10210-7
UR - https://europepmc.org/article/MED/42958195
AB - Background 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.Aim This study aimed to explore the difficulties, needs, and frustrations experienced by adolescents with AIS and their caregivers.Methods 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.Results 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.Conclusion 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.
SN - 1471-2474
ER -