The Sunnaas International Network Pediatric Spinal Cord Injury Study (SINpedSCI study)

Aim and research plan

The long-term goal of this research project is to optimize organization, care and rehabilitation in Norway and cooperating rehabilitation units internationally, to increase the awareness of subjective perceptions and psychosocial aspect of young persons with spinal cord injury, and to establish the use of outcome measures in local languages. Participants will be recruited from the rehabilitation hospitals cooperating within the Sunnaas International Network for Rehabilitation; Norway, Sweden, China, Russia, US, Israel, Palestine (SIN-units).

Specific aims and objectives

- To survey the SIN units in order to describe and compare the organization and delivery of inpatient rehabilitation services and systems of care for pediatric SCI patients

- To explore qualitatively psychosocial aspects of living with spinal cord injury in children and adolescents (and their caretakers) in SIN units using individual, semi-structured interviews

The recruitment will be done within the units cooperating in the Sunnaas International Network for Rehabilitation (SIN) and participating countries, local investigators, local collaborators and rehabilitation units.

In Study I (descriptive study/ survey) and II (explorative study/ interviews), SIN-units in Norway, Sweden, China, Russia, US, Israel and Palestine will participate. The local principle investigator in each unit will be responsible for collecting data in Study I and recruiting individuals to participate in Study II of the study.

Inclusion criteria´s for the target group in study I.

• Children and adolescents (≤ 18 years)

• Diagnoses: either a non-traumatic or traumatic SCI

• Has been discharged from acute treatment phase for 6 months or more

Inclusion criteria´s in study II (interviews) are the same as in study I, except that the target group is adolescents 13-16 years of age.

Potentially eligible individuals with SCI will be identified from the departmental or institutional database. If no suitable database is present in an investigative site, recruitment through alternative databases will be explored and discussed with project collaborators.

Once identified, the study coordinator and local investigator will agree participant identification codes for the selected individuals. The study coordinator will allocate a three letter code (the first two letters will originate from the country of the study site, and the third from the name of the institution).