Understanding the Experience and Perspectives of Parkinson’s Disease Patients’ Caregivers

Abstract

This research sets out to explore, uncover, and understand the experiences and perspectives of people who care for patients with Parkinson's disease (PD). To this end, 20 participants who accompanied patients with PD to a training organized by Parkinson Patients Support Organization-Ethiopia (PPSO-E) provided the data required. Analysis of the data produced several themes such as delay in PD diagnosis and intervention, differing reactions to PD diagnosis, toughness of caring for PD patients, community's limited understanding and distortion of PD, lack of specific name and clear expression for PD in local languages, lack of sufficient support to the caregivers, caregivers' compassion and patient's courageousness, and shortage and expensiveness of PD prescriptions. The themes produced have been discussed in light of existing literature. Based on the findings of this research, recommendations were forwarded and direction for future research was indicated.