NAVIGATING STIGMA AND SOCIAL EXCLUSION: EXPERIENCES OF FAMILIES LIVING WITH CHILDREN WITH NEURODEVELOPMENTAL DISORDERS: QUALITATIVE RESEARCH

Abstract

Background: Families of children with neurodevelopmental disorders frequently encounter stigma and social exclusion that extend beyond the diagnosed child and influence parental identity, emotional health, and social participation. Although quantitative research has documented caregiver burden and affiliate stigma, less is understood about how parents interpret and negotiate these experiences within their sociocultural contexts. A deeper exploration of lived experience is essential to inform culturally responsive, family-centered support strategies.

Objective: To explore how parents of children with neurodevelopmental disorders experienced, interpreted, and made meaning of stigma and social exclusion within their everyday sociocultural environments.

Methods: A qualitative design grounded in Interpretative Phenomenological Analysis was employed. Purposive sampling was used to recruit 10 primary caregivers of children formally diagnosed with autism spectrum disorder, attention-deficit/hyperactivity disorder, or intellectual disability from special education institutions in three major urban centers of Pakistan. In-depth semi-structured interviews lasting 60–90 minutes were conducted in participants’ preferred language. Interviews were audio-recorded, transcribed verbatim, translated where necessary, and analyzed through iterative idiographic and cross-case thematic procedures consistent with established IPA guidelines.

Results: The sample comprised 10 parents, each representing one child with a diagnosed neurodevelopmental disorder. Three interrelated themes were identified. Perceived parental blame and moral judgment were reported by 9 of 10 participants, with 8 describing recurrent public scrutiny and 7 reporting unsolicited parenting advice. Social withdrawal as a protective strategy was described by 8 participants, of whom 6 simultaneously reported feelings of isolation and loss of belonging. All 10 participants described processes of meaning reconstruction over time, with 8 explicitly reframing stigma as societal misunderstanding rather than personal failure. Advocacy or selective engagement with supportive networks was reported by 6 participants. Findings indicated that stigma operated through both overt and subtle social mechanisms, contributing to self-doubt, emotional fatigue, and anticipatory stress, while also prompting adaptive coping and identity renegotiation.

Conclusion: Stigma and social exclusion were experienced as cumulative and relational processes that shaped parental identity and social participation. Parents actively interpreted and negotiated these experiences, demonstrating resilience through meaning reconstruction and selective engagement. The findings underscore the importance of culturally responsive, family-centered, and community-level interventions that address both structural stigma and parental psychological adaptation.