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The experience of living with adolescent idiopathic scoliosis: a qualitative evidence synthesis using meta-ethnography

Abstract:

Background Adolescent idiopathic scoliosis (AIS) is a common spinal deformity with physical and psychosocial implications for adolescents. The aim of this qualitative evidence synthesis (QES) was to systematically search for, identify, and synthesise qualitative research in order to improve our understanding of what it is like to live with AIS and to facilitate empathetic and effective healthcare.

Methods We systematically searched 4 databases (Medline, EMBASE, PsycINFO and CINAHL) and used the 7 phases of meta-ethnography to synthesise qualitative evidence including studies with children and adolescents, and additional viewpoints from parents about the experience of AIS.

Results We distilled 7 themes. (1) Diagnosis turned time on its head revolves around the AIS diagnosis and the uncertainty of the future that accompanied it. (2) Usual activities no longer the same explores how activities and participation in everyday life are impacted by AIS. (3) Hiding my body describes the pervasive struggle with self-image and appearance. (4) I want to feel normal again explores adolescents’ desire to return to ‘normality’ and challenges of feeling different. (5) Balancing isolation and support considers the relationships in the adolescents’ lives alongside their feelings of isolation. (6) Trying to keep control of treatment decisions explores how adolescents and their parents strive to feel in control. (7) Fearing surgery yet feeling hopeful focused on the apprehension and fear around spinal surgery and the beacon of hope it represented.

Conclusions Our QES contributes to the understanding of the adolescent experience of living with AIS. From our findings, clinicians can better understand the physical and psychosocial obstacles and the challenges faced throughout the journey of AIS to inform their clinical interactions with these patients.

Publication status:
Published
Peer review status:
Peer reviewed

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Files:
Publisher copy:
10.1186/s12887-023-04183-y

Authors


More by this author
Institution:
University of Oxford
Division:
MSD
Department:
NDORMS
Research group:
Physiotherapy Research Unit, Nuffield Orthopaedic Centre
Role:
Author
More by this author
Institution:
University of Oxford
Division:
MSD
Department:
NDORMS
Research group:
Physiotherapy Research Unit, Nuffield Orthopaedic Centre
Role:
Author
More by this author
Institution:
University of Oxford
Division:
MSD
Department:
NDORMS
Research group:
Physiotherapy Research Unit, Nuffield Orthopaedic Centre
Role:
Author
More by this author
Institution:
University of Oxford
Division:
MSD
Department:
NDORMS
Research group:
Physiotherapy Research Unit, Nuffield Orthopaedic Centre
Role:
Author


Publisher:
BioMed Central
Journal:
BMC Pediatrics More from this journal
Volume:
23
Issue:
1
Article number:
373
Place of publication:
England
Publication date:
2023-07-22
Acceptance date:
2023-07-06
DOI:
EISSN:
1471-2431
Pmid:
37481537


Language:
English
Keywords:
Pubs id:
1499283
Local pid:
pubs:1499283
Deposit date:
2023-08-08

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