Exploring the perspectives on medication self-management among persons with spinal cord injury/dysfunction and providers

RATIONALE: Spinal cord injury/dysfunction (SCI/D) is an exemplar condition with a high prevalence of secondary complications, chronic conditions and use of multiple medications (polypharmacy). Optimizing medication self-management is important for persons with SCI/D to improve outcomes; however, there is a lack of research on how healthcare/service providers and persons with SCI/D experience medication self-management. OBJECTIVE: To explore attitudes and experiences of medication self-management from the perspectives of persons with SCI/D and providers, and to explore the extent to which the Taxonomy of Everyday Self-management Strategies (TEDSS) framework captured participants' experiences with medication self-management. METHODS: In-depth, semi-structured interviews were conducted by telephone until data saturation was reached. Interviews were transcribed verbatim and analyzed using constant comparative approaches. The TEDSS framework was adapted and applied deductively. RESULTS: Fifty-one individuals participated in this study, 32 providers and 19 persons with SCI/D. Disease controlling strategies was the domain discussed in most detail by all participants. In this domain, participants discussed managing medications and treatments, monitoring/managing side effects, and controlling complications. Process strategies (problem-solving, decision-making) and resource strategies (seeking support) were the next most frequently discussed domains. Among all participant groups, there was a lack of detailed discussion of social interactions, health behaviour, and internal strategies. Medication self-management support was not extensively discussed by any group. CONCLUSION: This study highlighted the complex nature of medication self-management. While persons with SCI/D and providers discussed similar components of the TEDSS framework, providers had minimal reflections on the impact of medication self-management on everyday life. This study identified the need for explicit discussions between providers and persons with SCI/D, involving all components of self-management and self-management support in order to improve medication self-management.