Exploring caregivers’ perceptions of community-based service requirements of patients with spinal cord injury: a qualitative study

Abstract

Abstract Background The incidence of spinal cord injury is increasing worldwide. Patients with spinal cord injury and their families face many difficulties during the disease course. Caregivers are more involved with these patients than anyone else, so recognizing patients’ care requirements based on caregivers’ opinions can facilitate care provision to these people. The purpose of this study was to explore caregivers’ perceptions of the community-based services requirements of patients with spinal cord injury. Methods This qualitative research was conducted in Iran from Apr 2021 to Dec 2022 using the conventional content analysis method. The participants in the study included family caregivers and providers of home care services to patients with spinal cord injury, who were selected by purposeful sampling. Data were collected by conducting 14 face-to-face interviews and analyzed based on the method proposed by Lundman and Graneheim. Results Data analysis led to the extraction of 815 primary codes, which were organized into two themes: community reintegration (with two categories, including the need to provide a suitable social platform and lifelong care) and palliative care (with two categories, including family conference and survival management). Conclusion Social facilities and infrastructure should be modified in a way that patients with spinal cord injury can appropriately benefit from community-based care services and an independent satisfactory life. Palliative care should be continuously provided from the time of lesion development until the patient’s death.