The Experience of care-giving for a person with Parkinson’s Disease.

Abstract

As the population continues to become more aged and at risk for chronic illness, there will be a growing need for caregivers. Caregivers to persons with Parkinson's disease (PD) face the challenge of providing care over many years due to the chronic progressive nature of this neurological disorder. The purpose of this study was to understand and discover the multi-dimensional cognitive, affective and psychomotor capabilities and attributes of informal care-giving for individuals with PD. The research question was: What is the meaning of the caring experience from the perspective of the informal caregiver in the day-to-day interactions with the person with PD? This phenomenological investigation looks into the lives of 13 caregivers who perceived that they were in a caring relationship with a person diagnosed with Parkinson's disease. Caregivers participated in two in-depth, open ended interview sessions that were audiotaped and then transcribed verbatim for analysis. Three themes emerged from the analysis: (a) Care-giving is an unplanned journey; (b) I am living with the disease too; and (c) My relationshiop with the person I care for and others is changing. Subthemes for each were described. The findings suggested implications for clinical practice and future research. First, caregivers should be provided formal guidance and educational opportunities from health care providers over the course of the disease process. Second, caregivers and persons with PD should be viewed from a holistic perspective to ensure optimal care for the person with PD and support for the caregiver. Third, a multidisciplinary collaborative team approach should be used to facilitate communication across disciplines with the management of PD. Fourth, caregivers should be provided opportunity and connections with support groups. Fifth, caregiver health and wellness should be optimized over the course of the disease process to keep the caregiver-care recipient relationship intact and strong. Sixth, caregiver vigilance and concern for safety should be fostered and evaluated. Seventh, caregiver stressors and protective factors should be identified and appropriate internventions instigated.