Peer-reviewed article
Psychosocial Burden of Adolescent Idiopathic Scoliosis: A Systematic Review and Meta-Synthesis of Patient and Caregiver Perspectives.
Wang S, Zhao J, Hu X, Yuan Y, Xu Y et al. ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This systematic review synthesized 19 qualitative studies from 10 countries examining the psychological experiences of adolescents with idiopathic scoliosis and their caregivers. Adolescents experience distinct emotional phases from diagnosis shock through treatment and recovery, while caregivers face mounting structural demands and emotional exhaustion. The study found a bidirectional interaction between patients and caregivers marked by tension between parental protection and adolescent autonomy. The research calls for stage-specific psychological support, better information delivery, caregiver training, and reduced stigma in healthcare and society.
Key points
- Adolescents' psychosocial experiences evolve through three phases: acute shock at diagnosis, dynamic adaptation during treatment, and divergent outcomes (posttraumatic growth or residual trauma) during recovery
- Caregivers experience cascading psychological burden progressing from structural strain (resource and logistical demands) to emotional exhaustion and depressive symptoms
- A pattern of 'conflictual intimacy' exists between patients and caregivers, combining direct conflict with family enmeshment, shaped by tension between parental protection and adolescent autonomy
- Healthcare systems show deficiencies in professional psychological guidance and insufficient social support systems for affected families
- Stigma, misconceptions, and inadequate psychological care in clinical practice exacerbate negative psychosocial experiences
Limitations
The review synthesizes qualitative studies without quantitative outcome measurements, so it cannot determine prevalence or severity of psychological burden across populations. The countries included are not specified in the document, limiting understanding of geographic variation in experiences.
Abstract
Background Adolescent idiopathic scoliosis (AIS) is a three-dimensional spinal deformity that occurs in adolescents, exerting multidimensional and bidirectional impacts on the physical and mental health and social functioning of both patients and their caregivers. Prevalent misconceptions and stigma, insufficient psychological care in clinical practice, and inadequate social support may further exacerbate their negative psychosocial experiences. Objective This review aimed to integrate and elucidate the core themes and evolving mechanisms of the psychosocial experiences of adolescents with AIS and their caregivers, reveal the interactional dynamics between the two groups throughout the disease trajectory, and provide an evidence-based foundation for optimising healthcare and social support. Methods Based on the qualitative evidence synthesis (QES) framework, the meta-aggregation method developed by the Joanna Briggs Institute (JBI) was employed. A systematic search of PubMed, Embase, CINAHL, PsycINFO, and Web of Science was conducted from database inception to April 2026. Qualitative studies exploring the psychological burden and lived experiences of adolescents with AIS and their caregivers were included. Results Nineteen qualitative studies from 10 countries, involving 323 participants, were included. At the patient level, three core themes were synthesized: acute shock and multidimensional responses during the initial diagnosis phase; dynamic adaptation and transient positive experiences during the treatment phase; and divergent pathways of posttraumatic growth and residual trauma during the recovery phase. At the caregiver level, three core themes were identified: a structural burden comprising both resource safeguarding and logistical demands; an imbalance in support systems characterized by a deficiency in professional guidance and disruption of family equilibrium; and a progression of emotional exhaustion from self-blame and intense pressure to depressive symptomatology. Furthermore, a dynamic of conflictual intimacy, encompassing both direct interactive conflict and enmeshment within the family system, emerged between patients and caregivers. Conclusion The psychological experiences of adolescents with AIS evolve through distinct temporal phases, while caregivers' psychological burden follows a cascading pathway from structural strain to emotional exhaustion. The two parties are locked in a bidirectional interaction shaped by the structural tension between parental protection and adolescent autonomy. Healthcare professionals should tailor psychological support to the patient's disease stage, ensure transparent information delivery, and provide transitional training for caregivers to mitigate the transmission of stress. At the societal level, it is essential to strengthen early screening and public education, eliminate stigma, and provide accessible support to help AIS families navigate role transitions throughout the disease course. Patient contribution Two adolescents with AIS and two family caregivers participated as co-investigators in this review. They contributed to refining the research question, prioritizing outcomes of importance, interpreting the findings, and reviewing the manuscript for clarity and relevance.