Between cultural ideals and lived realities: a longitudinal rehabilitation narrative after spinal cord injury

This study aimed to unfold one person’s long-term rehabilitation process Based on narratology, this study configured a rehabilitation narrative from a young woman’s lived rehabilitation experiences after spinal cord injury and her experiences with healthcare and social services. Interviews were conducted at 2, 3, 6, 9, 12 months, 2, 5 and 10 years after her accident. The process of resuming everyday life after spinal cord injury unfolded as a narrative shaped by lived experiences of disability and encounters with healthcare and social services. This narrative was characterised by a never-ending series of shifts between restoration and loss of capacity and function. This reflects that the narrative of the rehabilitee’s attaining a meaningful life despite that permanent physical limitations may be a continuing struggle. If the rehabilitee’s hopes and expectations deviate strongly from the support and services provided, tensions and frustrations may arise, potentially affecting the rehabilitation process and its outcome. A rehabilitee’s narrative is shaped by its context and the involved participants. Unfolding over time it illuminates challenges arising from misalignments between the rehabilitee’s lived experience of life-changing health issues and the perspectives of healthcare and social service professionals. The rehabilitation narrative from the rehabilitee’s perspective can be a source for healthcare and social services professionals to learn from.Healthcare and social services professionals need to consider how their assumptions about a rehabilitee’s chances for recovery may affect a rehabilitee’s hope for a meaningful future and impact hope as a driving force in a rehabilitation trajectory.Due to the potentially different expectations of rehabilitees and healthcare and social services professionals, alignment of expectations is necessary to identify the rehabilitee’s resource for the rehabilitation effort and not to debilitate the rehabilitee’s endeavour.Facilitating a smooth transition to the home situation, ensuring that the necessary aid and follow-up are established, may be essential to the continuation of the achieved function into everyday life of a rehabilitee.A rehabilitee’s ability to mobilise willpower seems to be crucial if the healthcare and social services professionals are unable to engage in the rehabilitees struggle to find a way towards the desired life The rehabilitation narrative from the rehabilitee’s perspective can be a source for healthcare and social services professionals to learn from. Healthcare and social services professionals need to consider how their assumptions about a rehabilitee’s chances for recovery may affect a rehabilitee’s hope for a meaningful future and impact hope as a driving force in a rehabilitation trajectory. Due to the potentially different expectations of rehabilitees and healthcare and social services professionals, alignment of expectations is necessary to identify the rehabilitee’s resource for the rehabilitation effort and not to debilitate the rehabilitee’s endeavour. Facilitating a smooth transition to the home situation, ensuring that the necessary aid and follow-up are established, may be essential to the continuation of the achieved function into everyday life of a rehabilitee. A rehabilitee’s ability to mobilise willpower seems to be crucial if the healthcare and social services professionals are unable to engage in the rehabilitees struggle to find a way towards the desired life