Authors
Khansa Muhammad Sarwar, Shaheer Ellahi Khan, Babar Tasneem Shaikh, Zareef Uddin Khan, Syeda Hina Shah, Khola Raashid, Muhammad Jawad, Aqsa Elahi
Published in
BMJ open. Volume 16. Issue 9. Pages e123862. Sep 17, 2026. Epub Sep 17, 2026.
Abstract
To explore the psychological and social experiences of youth aged 12-30 years living with congenital syndactyly in Islamabad.
A qualitative phenomenological design was employed. Semi-structured, in-depth interviews were conducted.
12 participants aged 12-30 years with congenital syndactyly residing in Islamabad were recruited using purposive sampling from community organisations and special education centres. Interviews lasting 30-60 min were audio-recorded, transcribed verbatim and analysed using thematic analysis.
Five major themes emerged: (1) limited understanding and concealment of the condition; (2) emotional burden including loneliness, intrusive thoughts and in some cases severe distress; (3) pervasive stigma manifesting through pity, moral and religious judgement, and dignity violations; (4) barriers to participation in education and everyday life; and (5) coping strategies involving faith, concealment and sometimes harmful responses alongside significant unmet support needs.
Congenital syndactyly was experienced as a complex psychosocial condition rather than solely a physical anomaly. The findings highlight the need for holistic, patient-centred care integrating psychological support, stigma reduction, inclusive education and community awareness. This study provides context-specific qualitative evidence to inform healthcare practice, policy and research in Pakistan.
PMID:
42754282
Bibliographic data and abstract were imported from PubMed on 18 Sep 2026.
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