Identified needs to enhance life for people with spinal cord injury: a part of the Swedish Needs Assessment Project

Abstract

Purpose: To identify factors that contribute to the enhanced life of people with spinal cord injury (SCI) in Sweden.

Materials and methods: This cross-sectional study combined workshops (n = 38) and survey data (n = 243) from people living with SCI and their relatives, health professionals, and personal care assistants working with people living with SCI. The data were first categorized using Bronfenbrenner's bioecological model, followed by a conventional content analysis.

Results: The factors that contribute to an enhanced life for people living with SCI are similar to those of the general population, including relationships, leisure activities, and occupation within the mesosystem. However, the unique components of the exosystem and macrosystem are specifically associated with people living with SCI. The exosystem, particularly in healthcare, plays a major role for medical reasons but also tends to obtrude and minimize the mesosystem. The macrosystem is essential, as it sets the rules that govern the actors in the other layers, creating prerequisites for meeting the needs of the mesosystem and exosystem.

Conclusions: The needs that contribute to an enhanced life are multifaceted and individualized. Therefore, these systems must be flexible throughout the lifespan of individuals with SCI.

Keywords: Bronfenbrenner’s bioecological model; Quality of life; lived experience; pre-requisites; spinal cord injury.