Quality of life, work, and social participation among individuals with spinal cord injury

Spinal cord injury (SCI) refers to damage of the spinal cord due to trauma or disease that can cause paralysis and secondary health problems. The aim of this thesis is to explore how people with SCI perceive their quality of life (QOL), whether they are capable to work and participate in social activities and how long it takes to return to work. A qualitative study performed in Indonesia showed that, for Indonesian people with SCI, QOL is equal to being able to participate, having social support, having relationship with God, being independent and accepting the condition. This study also showed that desired levels of work and social participation were out of reach, because these people encountered significant hurdles such as inaccessible environment and stigma. A survey study performed in the Netherlands showed that five years after hospitalization, almost half of the people with SCI were able to return to work, especially those with higher education and better functional status. However, a longitudinal analysis of work participation during these five years, revealed that only 20% of these people with SCI showed a relatively fast and sustained return to work trajectory.Addressing gaps in participation of people with SCI requires long-term, multifaceted and comprehensive approaches depending on the existing health and social welfare system. As participation in work and community life are almost universally regarded as important for QOL, future research should address intervention strategies on these aspects to improve participation and hence QOL