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

Youth with syndactyly reported limited understanding of their condition and actively concealed it from others.

• This was identified as one of five major themes emerging from the thematic analysis
• Concealment was used as a coping strategy alongside faith-based responses
• Participants were recruited from community organisations and special education centres in Islamabad
• 12 participants aged 12-30 years with congenital syndactyly were included

Participants experienced significant emotional burden including loneliness, intrusive thoughts, and in some cases severe distress.

• Emotional burden was identified as one of five major themes in the thematic analysis
• The emotional experiences ranged in severity, with some participants reporting severe distress
• Interviews lasted 30-60 minutes and were audio-recorded and transcribed verbatim
• A qualitative phenomenological design was used to capture lived experience

Pervasive stigma manifested through pity, moral and religious judgement, and dignity violations experienced by participants.

• Stigma was identified as one of five major themes emerging from thematic analysis
• Religious and moral judgement were specific forms of stigmatisation reported
• Dignity violations were documented as part of the stigma experience
• The study was conducted in Islamabad, Pakistan, providing a specific cultural and religious context for these findings

Participants with syndactyly reported barriers to participation in education and everyday life.

• Educational barriers were identified as one of five major themes
• Participants were recruited partly from special education centres, suggesting existing segregation from mainstream education
• Barriers to everyday life participation were reported alongside educational barriers as a combined theme
• The age range of 12-30 years spans critical periods of educational and social development

Coping strategies employed by participants included faith, concealment, and sometimes harmful responses, alongside significant unmet support needs.

• Coping strategies were identified as the fifth major theme in the thematic analysis
• Harmful coping responses were noted among some participants
• Unmet support needs were described as 'significant'
• Purposive sampling was used to recruit 12 participants, a sample size appropriate to qualitative phenomenological methodology

The findings indicated a need for holistic, patient-centred care integrating psychological support, stigma reduction, inclusive education and community awareness.

• The study authors describe syndactyly as 'a complex psychosocial condition rather than solely a physical anomaly'
• The study provides 'context-specific qualitative evidence to inform healthcare practice, policy and research in Pakistan'
• Five domains of intervention were identified: psychological support, stigma reduction, inclusive education, community awareness, and patient-centred care
• Semi-structured, in-depth interviews were the primary data collection method