Beyond the patient: understanding and addressing third-party disability in family members of people with Parkinson’s disease

Abstract

Purpose: Family members of people with communication disorders associated with Parkinson’s disease (PD) experience third-party disability. It is unknown whether these experiences are addressed in the rehabilitation process for communication disorders. The purpose of this study was to explore family member involvement in treatment from the perspectives of family members and speech-language pathologists (SLPs) to understand how third-party disability is addressed. Methods: A mixed-methods design was used to capture the perspectives from two stakeholder groups, family members of people with PD and SLPs who provided services to people with PD. The first phase of this study used qualitative interviews with nine family members. After a preliminary analysis of the family member data, a survey was developed and administered to SLPs in the United States as the second phase. A total of 110 completed surveys were used for analysis. Qualitative data were analyzed for emergent patterns, and quantitative data were analyzed using descriptive measures. Data were then integrated and analyzed together. Results: Three topic areas emerged from the data. First, family member involvement in treatment was typically for the purpose of supporting communication for the person with PD. However, family members and SLPs held divergent views such that family members reported little to no involvement, whereas many SLPs reported involving most family members in treatment. Second, there was a range in perspectives of family members and SLPs with regard to meeting family member needs in treatment. Several family members reported that their need to understand the person with PD was met, as improvements were seen in his/her communication abilities. However, other needs such as managing the challenging communication interactions between them and the person with PD were not met. Many SLPs reported supporting family members by counseling them and referring them to additional supportive services, but few had goals specifically addressing family member needs. Although family members did not differentiate between the type of communication disorder in the person with PD, fewer SLPs reported involving family members of people with PD who had cognitive-communication disorders than those with dysarthria. Third, there were multiple factors influencing SLPs’ ability to involve family members in treatment. SLPs’ views about including family members and their perceptions about family members’ and clients’ beliefs and preferences suggested that these factors may not have a negative influence on their practice. However, SLPs held mixed opinions about the work environment to support their practice. Many SLPs reported that their work setting supported their time to involve family members, but insurance reimbursement also limited their ability to do. The final key finding from this study suggested that SLPs perceived many resources to be helpful in preparing them to involve family members in treatment. Almost all (if not all) SLPs reported that the clinical experiences they gained over time and learning from colleagues were helpful resources. Attendance at continuing education events and reading publications that were both peer-reviewed and non-peer reviewed were also helpful. However, SLPs’ had ambivalent ideas about the strength and usefulness of the evidence base. Most SLPs felt that there was strong evidence demonstrating the role of family members in treatment, but only about half believed that the evidence guided their practice specifically on meeting family members’ needs. Finally, with regard to the clinical training and education that they received from their graduate education, fewer SLPs felt that these resources were helpful in preparing them to include family members in treatment. Conclusions: Prior literature demonstrates that family members experience third-party disability associated with communication disorders that are present in people with PD. Family members in this study discussed needing various supports from treatment, but not all of their needs were met. SLPs appeared to express positive opinions about involving family members in treatment, but there may be barriers related to the work environment and the current evidence base to support them in their practice. The challenging experiences that family members face as a result of communication disorders in the person with PD and the barriers affecting SLPs’ practice suggest that there should be a shift of the healthcare system to adopt family-centered care so that outcomes from the rehabilitation process can be enhanced.