Article

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.

Langue : ANGLAIS