Spinal Cord Injury as a Socially Lived Disability: A Phenomenological Study of Rehabilitation and Everyday Life Among Community-Dwelling Individuals.

Background/

Objectives

Spinal cord injury (SCI) leads to long-term changes in mobility, bodily function, and everyday participation, extending beyond physical impairment to affect autonomy, identity, and social inclusion. In Greece, limited community-based rehabilitation services, environmental inaccessibility, and fragmented follow-up care further shape the lived experience of individuals with SCI. This study aimed to explore the lived experiences and perceived rehabilitation needs of people with paraplegia living in the community, adopting a phenomenological approach to understand rehabilitation as an ongoing process of reclaiming autonomy, dignity, and participation.

Methods

A qualitative phenomenological design was employed. In-depth semi-structured interviews were conducted with fourteen individuals with paraplegia following SCI. Data were analyzed using Braun and Clarke's reflexive thematic analysis, supported by ATLAS.ti software.

Results

Participants described living with SCI as a 'Socially lived disability: a daily confrontation with an inadequate system and the ongoing struggle for accessibility, autonomy, and dignity' (Overarching Theme). Participants' experiences were organized into six themes: (A) facing the new reality, (B) barriers and facilitators of independent living, (C) role and importance of rehabilitation, (D) me and others around me, my difference, (E) the need for adequately trained and informed health professionals and caregivers, (F) ageing as an additional challenge.

Conclusions

Living with SCI is experienced as an ongoing process of embodied and social reorientation, in which autonomy, participation, and dignity are continuously negotiated rather than restored once and for all. Rehabilitation emerges as a lifelong, person-centered process that extends beyond functional recovery to support bodily confidence, accessibility, social inclusion, and quality of life across the life course. These findings highlight the need for coordinated, community-based rehabilitation systems, accessible environments, and adequately trained health professionals capable of addressing the evolving functional, social, and existential realities of individuals living with SCI.