Health and Fitness

The challenges characterizing the lived experience of caregiving. A qualitative study in the field of spinal cord injury

C. Zanini, J. Amann, et al.

This qualitative study delves into the lived experiences of caregivers of individuals with spinal cord injury in Switzerland, revealing the dynamic challenges they face across different phases of caregiving. Conducted by Claudia Zanini, Julia Amann, Mirjam Brach, Armin Gemperli, and Sara Rubinelli, the research highlights the vital role of informal caregivers and emphasizes the need for adaptable strategies to support them.

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Abstract

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

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