Relatives of people with spinal cord injury: a qualitative study of caregivers’ metamorphosis

Abstract

Study design Qualitative study. Objective To detect the major challenges and needs reported by family member caregivers of people with spinal cord injury (SCI). Setting Family member caregivers of people with SCI and expert professionals were evaluated. This study was conducted in Spain, and most of the participants attended the National Paraplegics Hospital of Toledo. Methods We performed 25 semi-structured interviews. The data were analyzed from a phenomenological perspective using the Colaizzi method. Results The metamorphosis of the caregiver is a complex personal and family-related process. Analysis of the adjustment phase of the caregiving role allowed us to describe three stages, patterns, and trends. Five basic needs were identified. Conclusions People with SCI and their primary caregivers experienced changes in every sphere of their lives. Their most important needs were psychological support, social support, economic resources, information, training throughout the process of suffering, and the creation of informal groups of mutual aid.