This qualitative exploratory study investigated the lived experiences of 22 caregivers (16 women, 15 life partners, mean age 61) of individuals with spinal cord injury (SCI) in Switzerland, focusing on the challenges they faced. Caregiving was characterized by two phases: an initial, shorter phase marked by adjustment challenges (shock, unpreparedness); and a lifelong phase with recurrent challenges balancing caregiving and personal life (prioritizing care, negotiating tasks). Challenges related to housing, finances, and bureaucracy were present in both phases. The study concludes that informal caregivers play a crucial role in SCI support, but their needs are dynamic, requiring adaptable strategies for empowerment.
Publisher
Spinal Cord
Published On
Mar 19, 2021
Authors
Claudia Zanini, Julia Amann, Mirjam Brach, Armin Gemperli, Sara Rubinelli
Tags
caregiving
spinal cord injury
qualitative study
informal caregivers
challenges
Switzerland
dynamic needs
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