Experiences of people with spinal cord injuries readmitted for continence-related complications: a qualitative descriptive study

Study design: Qualitative descriptive. Objectives: To describe the experiences of people with Spinal Cord Injury (SCI) re-admitted to the hospital due to continence-related complications. Setting: Inpatient service of a large spinal unit in North-West of Italy. Methods: Semi-structured interviews were conducted on a purposive sample of people with SCI (n = 11; age range 22–66 years, n = 5 females, n = 6 with cervical injuries), audio-recorded, and transcribed verbatim (duration range 38–52 min). Data were analysed inductively using the thematic analysis approach as described by Braun and Clarke. Results: Three main themes were identified: (i) managing the frustration of continence-related complications; (ii) finding your way to deal with continence-related complications; (iii) identifying precise needs to deal with continence-related complications. Obtained findings highlighted the perceived emotional and physical burden suffered by people with SCI and their caregivers regarding the constant look for solutions and renounces to social participation, the different strategies implemented to address continence-related complications, and the unmet or partially met needs of people with SCI regarding support in transition to the community, infrastructure, and reliable information or education. Conclusions: Continence-related complications have a significant impact on the lives of people with SCI and their families. Interventions using technological tools and peer participation could reduce the burden associated with continence-related complications. Specific instruments are needed to facilitate evaluation, goal setting, and promote discussion of continence to allow HCPs to support people with SCI. Structured follow-up for SCI survivors should also focus on their needs to improve knowledge, facilitate decision making, and promote preventive behaviours.