Barriers to providing long-term care for persons with spinal cord injury in Switzerland: a qualitative study of service delivery and workforce challenges

Background: Switzerland’s long-term care (LTC) system is highly fragmented between regions, service providers and financial actors. Persons with spinal cord injury (SCI) have a high need for care and specialized needs which, from anecdotal evidence, Swiss national and regional LTC policies may fail to address. The objective of this qualitative study is to understand which aspects of service delivery and workforce in the Swiss LTC system prevent the provision of necessary LTC to persons with SCI. SCI is a good index case for persons with complex health conditions with specialized needs for LTC. Methods: Semi-structured interviews were performed to collect data, which was then analyzed through thematic analysis. In order to ensure maximum variation, purposive sampling was used. Results: The sample included 12 participants, stratified by care provision type and Swiss region. Five systemic barriers were identified: missing infrastructure (e.g., specialized facilities, respite beds, accessible housing, transportation), insufficient integration of social assistance and psychological support, inadequate personnel resources, lack of SCI-specific knowledge in the workforce, and fragmented care. These challenges arise from the specialized needs and younger age of individuals with SCI compared to average LTC users. These barriers significantly impact persons with SCI by prioritizing staff over patient preferences, burdening them with over-communicating their needs, trading-off between assistance and independence, risking complications and hospitalizations, and even facing rejection from LTC services. Conclusions: Access to high-quality LTC is crucial for supporting persons with SCI in leading self-determined, healthy lives. This study highlights Swiss LTC challenges that may affect not only persons with SCI but also others with complex or chronic diseases. Results emphasize that the system was not designed for individuals diverging from the prototypical elderly person. These issues should be further researched, particularly from the patient perspective, and addressed by health policy stakeholders to modernize the system and better support both its overburdened employees and increasingly complex patients. Supplementary information: The online version contains supplementary material available at 10.1186/s12913-025-13548-1.