Spinal Cord Essentials: the development of an individualized, handout-based patient and family education initiative for people with spinal cord injury

Study design: Mixed (environmental scan, qualitative and semiquantitative). Objectives: To develop a customizable patient and family education resource for people with spinal cord injury (SCI). Setting: SCI rehabilitation center (Canada). Methods: An environmental scan was conducted and stakeholder input sought to generate a list of potential handouts and inform content development. Staff members were recruited to draft handouts, which were later edited and finalized by the project team. Hardcopies of handouts were placed in cabinets throughout the rehabilitation center. Staff members were also trained/coached to facilitate and promote usage; which was then tracked for 2 years. Results: One hundred and fifty-six potential handouts were identified; 83 deemed high priority. Seventy-two handouts addressing patient organization, self-management and community integration were finalized for phase 1. At inpatient admission, patients receive a binder containing base materials. The binder is then customized and populated with pertinent handouts throughout the rehabilitation admission, and taken home at discharge for future reference. Handouts with the highest usage covered medical management (for example, bladder, bowel and pressure ulcers), mobility and activities of daily living. Handouts were also helpful for staff training and orientation, as well as increasing the confidence of staff providing education outside their immediate area of expertise. Conclusion: Spinal Cord Essentials is a novel patient and family education initiative comprised of practical handouts that address many important aspects of SCI management. Handouts can be downloaded for free in four languages (English, French, Chinese and Farsi) at www.spinalcordessentials.ca. Additional handouts are planned for subsequent phases of the project