University of New Hampshire - Manchester
Mentor: Dr. Ellen S. Cohn, Professor of Psychology
Psychological and Social Factors Related to Quality of Life Issues for Persons with Parkinson's Disease: Do Support Groups and Caregivers Make a Difference?
Parkinson's Disease is a chronic brain disorder characterized by tremors and a loss of muscle control. Diagnosis of the disease typically occurs after age sixty. However, a significant number of diagnoses occur as early as age thirty. Because Parkinson's Disease is not fatal, afflicted individuals must cope with their advancing symptoms for many years. The importance of social support networks for a patient's quality of life is well documented (Abbey & Andrews, 1985). Specifically, Matzrese and Salmon (1997) found that positive social support directly improves the physical health and longevity of people with cancer. However, few studies on the importance of social support networks and quality of life issues for Parkinsonians have been conducted. Studies on social support networks generally focus on caregivers and support groups, with caregiver research emphasizing caregiver strain (Knight, Lutzky, & Macofsy, 1993). One of the few studies of Parkinson's caregivers suggests that the progression of the disease has a direct effect on caregiver strain and hence the quality of care Parkinsonians receive (Carter, et al, 1998). The purpose of this study is to understand the importance of caregivers and support groups on Parkinsonians' quality of life. Questionnaires, including the Social Support Scale (Sherbourne & Hays, 1990), the Social Network Scale (Stokes, 1983), and the Parkinsons Disease Questionnaire (Jenkinson, Fitzpatrick, and Peto, 1994), are administered to caregivers and individuals with Parkinson's Disease. Using a series of open-ended questions, these same caregivers and Parkinsonians are also interviewed with regard to positive and negative psycho-social factors related to quality of life. Findings from this study will help to create more beneficial support systems for Parkinsonians and will help ensure a better quality of life for all involved with this disease.