"I am just trying to live a life!" -a qualitative study of the lived experience of pressure ulcers in people with spinal cord injuries.

Background: Pressure ulcers (PUs) are frequently reported in people with spinal cord injuries (SCI). Wound management in people with SCI involves relieving pressure on the affected area by means of immobilisation and bed rest. The healing time of a PU can vary, but often takes several months or even years, causing people to stay in bed for prolonged periods of time.

Objective: This study aims to explore the perspectives and lived experiences of people with SCI who are affected by PUs.

Design: and method: This study is a qualitative explorative study that employs individual semi-structured in-depth interviews to obtain the narratives of people with SCI and a pressure ulcer. We used a phenomenological-hermeneutic approach that was inspired by Ricoeur's theory of interpretation. The analysis was performed in three levels: Naïve reading, structural analysis and critical interpretation and discussion.

Participants: and setting: Ten people with SCI who were being treated in the Danish healthcare system for their PU participated in this study: six participants had experienced a complete traumatic SCI, three had an incomplete traumatic SCI, and one had a non-traumatic complete SCI. The study included nine men and one woman, aged 49-81 years (mean 64). Nine had a PU in the seating area, while one had the ulcer on the leg.

Results: The analysis revealed three themes: 1. Struggling to balance prevention with an active, meaningful life, 2. Challenges and consequences of pressure relief protocols and bed rest, 3. Experiencing prolonged and incoherent treatment with varying levels of staff engagement and competencies.

Conclusions: People with SCI and a PU have difficulty balancing their active, redefined lives when subjected to a strict pressure relief protocol. The consequences of immobility caused by pressure relief include reduced social and community participation and decreased quality of life. PU treatment is experienced as incoherent and unnecessarily lengthy, leading to a deterioration in the wounds. Improving PU treatment for people with SCI is of utmost importance and has the potential to benefit not only the people with SCI but also the healthcare system and the economy.