Developing the Construct of Social Support in Parkinson's Disease

Abstract

Although social support has been recognized as an integral component of health and quality of life, the concept has not been adequately defined in the literature on Parkinson's disease. The purpose of this study was to explore the meaning of social support in Parkinson's disease by examining social support as perceived by both the individuals with Parkinson's and their caregivers. Participants and caregivers completed the Parkinson's Disease Quality of Life Questionnaire (PDQ-39), and these data were used to analyze the degree of convergence between client and caregiver report and examine the role of social support as related to other quality of life domains. The results indicate that caregivers perceived the clients' quality of life to be more problematic than the clients perceived their own quality of life. Clients and their caregivers demonstrated a greater degree of convergence on overt domains, such as mobility and cognition, and showed little convergence on subjective quality of life domains, including social support, suggesting that clients and caregivers were using different criteria to assess social support and other covert domains. It was also found that social support was more interrelated with other quality of life domains when reported by the caregiver as compared to the client. This finding suggests that caregivers may utilize the client's performance in other quality of life domains, such as emotional well-being, in determining whether sufficient social support is being provided. Thus, caregivers and clients may utilize different factors in their analysis of social support. The complex nature of social support in Parkinson's disease is discussed as related to the differing perspectives of caregivers and clients. These varying perspectives make it essential for clinicians to recognize both perspectives of social support, in order to develop appropriate assessments and interventions.