Psychological experiences of syndactyly among youth aged 12-30: exploring mental health challenges and coping mechanisms in Islamabad - a qualitative study.

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.