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Third-Party Disability in Family Members of People With Communication Disorders Associated With Parkinson's Disease

Mach, Helen; Baylor, Carolyn; Hunting Pompon, Rebecca; Yorkston, Kathryn

doi: 10.1097/TLD.0000000000000172
Original Articles
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The purpose of this study was to explore the impact of communication disorders on family members of people with Parkinson's disease (PD) through the lens of third-party disability. Nine community-dwelling family members who live with people with PD participated in semi-structured interviews. Data were collected and analyzed using the qualitative research methods from the tradition of phenomenology. Two themes emerged from the analysis of data. The first theme, “What?” captures examples of how communication between participants and their family members has changed because of PD, and how participants attempt to manage frequent communication breakdowns. Two subthemes address communication challenges related to changes in speech and changes in cognitive–linguistic skills, respectively, in their family members. The second theme, “It brings up things that have changed,” addresses the broader life impact that the communication changes have had on participants. The first subtheme describes how participants are changing their roles to take on more communication-related responsibilities in their households while still trying to maintain the dignity of their family members. The second subtheme reveals how participants experience grief and loss in that the decline in communication between themselves and their family members brings about a loss of connection with the person they may be closest to and, hence, changes their relationship with that person. Family members experience third-party disability related to communication disorders in their family members with PD. Some of these experiences are similar to third-party disability experienced by family members of people with other types of communication disorders. Better understanding of the extent and nature of third-party disability would help clinicians address the communication needs of both their clients with PD and their family members.

Department of Rehabilitation Medicine, University of Washington, Seattle (Ms Mach and Drs Baylor and Yorkston); and Communication Sciences and Disorders, University of Delaware, Newark (Dr Hunting Pompon).

Corresponding Author: Helen Mach, PhD, Communication Sciences and Disorders, University of Delaware, 100 Discovery Blvd, 6th Fl, Newark, DE 19713 (hmach@udel.edu).

The authors have indicated that they have no financial and no nonfinancial relationships to disclose.

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