Objectives

To explore how individuals with spinal cord injury self-manage the prevention and treatment of pressure ulcers and to provide insight into experiences with self-management support.

Design

Qualitative study using semi-structured interview and a deductive thematic analysis.

Setting

Community

Participants

Twelve of the 14 participating adults with a spinal cord injury had experience with pressure ulcers, and eight of these had a current pressure ulcer.

Results

Respondents suggested to tailor treatment of pressure ulcers to patients’ individual wishes and capabilities of patients. Patients and caregivers need to be aware of the importance of determining the cause of pressure ulcers to prevent deterioration. Patients often depend on informal caregivers for follow-up and prevention, and healthcare professionals in non-SCI specialties often lack the knowledge needed to manage pressure ulcers in this specific patient group. Tailored education and peer support are important for patients to set boundaries, be assertive, and cultivate a positive attitude when dealing with pressure ulcers. It is difficult to combine treatment of severe pressure ulcers and preventive measures with work roles. Managing the social impact of pressure ulcers requires more coordination with caregivers.

Conclusions

To support self-management of pressure ulcers in patients with a spinal cord injury, they must find out which preventive measures and treatments suit them best. Healthcare professionals play an important role in the self-management of pressure ulcers and can help patients deal with the emotional and social impact of pressure ulcers. To know patient's needs and tailor their education, healthcare professionals of non SCI organizations need to have knowledge of pressure ulcers management of this specific patient group.