Secondary health conditions and spinal cord injury: an uphill battle in the journey of care.

Purpose: To understand the journey of care in the prevention and management of secondary health conditions (SHCs) following spinal cord injury (SCI).

Method: This was a case study design with 'Ontario' as the case. The Network Episode Model was used as the conceptual framework. Data sources included in depth interviews with persons with SCI, care providers, and policy and decision makers. Document analysis was also conducted on relevant materials and policies. Key informants were selected by purposeful sampling as well as snowball sampling to provide maximum variation. Data analysis was an iterative process and involved descriptive and interpretive analyses. A coding structure was developed based on the conceptual framework which allowed for free nodes when emerging ideas or themes were identified.

Results: Twenty-eight individuals were interviewed (14 persons with SCI and 14 persons representing care providers, community advocacy organization representatives, system service delivery administrators and policy-makers). A major over-arching domain that emerged from the data was the concept of 'fighting'. Eleven themes were identified: at the micro-individual level: (i) social isolation and system abandonment, (ii) funding and equitable care, (iii) bounded freedom and self-management; at the meso care provider level: (iv) gender and caregiving strain, (v) help versus disempowerment, (vi) holistic care-thinking outside the box, (vii) poor communication and coordination of care; and at the macro health system level: (viii) fight for access and availability, (ix) models of care tensions, (x) private versus public tensions and (xi) rigid rules and policies.

Conclusions: Findings suggest that the journey is challenging and a persistent uphill struggle for persons with SCI, care providers, and community-based advocates. If we are to make significant gains in minimizing the incidence and severity of SHCs, we need to tailor efforts at the health system level.

Implications For Rehabilitation: • Secondary health conditions are problematic for individuals with a spinal cord injury (SCI). • This study aimed to understand the journey of care in the prevention and management of secondary health conditions (SHCs) following SCI. • Findings suggest that the journey is challenging and a persistent uphill struggle for persons with SCI, care providers, and community-based advocates. • All stakeholders involved recognized the disparities in access to care and resources that exist within the system. We recommend that if we are to make significant gains in minimizing the incidence and severity of SHCs, we need to tailor efforts at the health system level.